Update!!!

     I am sorry for the delay in writing.  To be honest, the blog became emotionally draining on me. Also, there isn;t much happening.  We get up every day, eat, I go to work, and I come home on most days after everyone except Katy has gone to bed.  It isn’t nearly as “interesting” as it once was.  That being said, I have finally gotten past a certain point in my emotional recovery that I think I can write again. 

     The baby is getting so big!  She is walking everywhere, and I believe she eats more than the other two kids!

    Katy walks almost every day of the week, and uses her arms to do rehab with the dominos, and also to use a stylus to surf the internet on her new tablet.  She has had all of her blood tests come back normal for the last 4 months, and hasn’t been in the hospital since December.

    Amber is doing great in school!  She is ready for a Summer break, and will be spending a month in Austin with her dad.  We get letters every day from colleges courting her!

   Jake is ready for Summer break!  He will be hanging with friends, riding his bike, and spending a few weeks with me at the beach for Rock N Roll band camp.

     Katy is singing in our band, Soulshine.  She does backups, and I play guitar.  You can check us out on www.reverbnation.com/soulshinebandtx.

  Thank is about all I have time for now.  I hope this update finds all of you well.

Love to all,

Al

Happy New Year! Lots of news.

I had planned on blogging MUCH sooner, but, in usual fashion, life kept throwing curve balls at us.  Since my lst blog, Katy has been in the hospital twice, and I have been in once.  We are both fine.  Katy had two bouts with dehydration and high blood calcium.  Both are, in part, due to her not having the large intestine.  On her second stay, the doctors inserted a portocath (spelling?) to make it easier for doctors to access her, and to make it easier to hydrate her via IV.  My trip to the hospital was not a big deal.  I had a small absess on my face, but I wanted to make sure that it was nothing bigger.  I’m home with the family now. 

Speaking of “home,”  our new house is great.  We are settling in nicely, and TRYING to keep up with all the leaves that fall in our yard.  I caught the little old man next door blowing his leaves in our yard.  I laughed.  Our other neighbors are AMAZING!  The sweet couple that lives next door has quickly become close friends, and we feel blessed to have moved in next to them.

Amber is doing well in school, and such a HUUUUGE help.  She comes home from school, takes Jake and Arielle to Jake’s MMA class, and then comes home and makes dinner while everyone is waiting for me to get home.  Then she does her homework. 

Jake and Arielle continue to be fun-loving kids, and keep us all in stitches!

Our other member of the family is Shantel.  Shantel started off as Katy’s nurse, and Arielle’s caretaker.   Now “Auntie Tell” is a daily part of our family, and has been a God send.  She cooks, cleans, gives medicine, organizes, takes Katy to therapy, and is a big part of what keeps our lives going. 

Other “Angels” have shown up on our doorstep and helped us out of the goodness of their hearts.  There are too many to mention, but we would like to hug them all!  One particularly kind man, Larry, owns Sundown Lawn Service.  Larry has kept the lawns up at the old house, and had his crew do our leaves at this house. 

Ali Kay, at Positive Space Art, has done murals in 2 of our children’s room, and is about to do another.  This incredibly sweet, and unbelievably talented, young lady has created artistic masterpieces.  What a great gift to our kids to customize their rooms.  It helps to let the kids know that we aren’t going anywhere, this IS our house.

Thanks cannot begin to express how we feel about Betta, Mike, and Jen.  They have worked insane hours on our behalf, and there aren’t words to explain what they have done for us.  Thanks you 3!

To everyone else, thank you all for your prayers, dontaions, emails, food, gifts, thoughts, ideas, and support.  You have not only done wonderful things for our family, but many people contact me to tell me how your kindness has reaffirmed their faith in humanity. 

No promises, but I will try to blog again soon.  May 2011 find all of you healthy, happy, and with those you love.

Love to all,

Al

A quick call for help….

Sorry to be so short, and to the point, but Katy’s nurse has to be gone Thursday, and I have to work all day Thursday and Friday.  I am subbing for another teacher who is out, and running sound for a choir concert.  So if there is anyone who knows us that has some time to hang with Katy and Arielle…..HELP!  You can reach me at

alhayesmusic@yahoo.com

Thanks!

Love to all,

Al

Sunday, Sunday, Sunday!!!

I am always amazed at how many people and organizations have come out to help us.  This Sunday the Houston Aeros Hockey team is donating proceeds from the game to the Katy Hayes Fund!  Katy, the kids, and I will be there to enjoy all of the hockey action.  If anyone is interested, please follow the information below to purchase tickets.  Thanks!

Love to all,

Al

This Sunday join us for a Houston AEROS Hockey game benefitting Katy Hayes.  Simply buy your ticket through this link or at the number below and a portion of each ticket purchased will go directly to help Katy.  These are regularly priced tickets.  Prices run $15., $25. and $35.  The game is this Sunday, October 17th at 4:05 p.m. in the Toyota Center Downtown.  Please, invite some friends and buy your tickets today!!!

 

http://www.ticketingcentral.com/V2/Home. aspx?I=AgAAAAAAAADtfS8lAAAAAABl%2Fv%2F%2 F%2FwBeAAAABWFlcm9zAP%2F%2F%2F%2F%2F%2F% 2F%2F%2F%2F

 

 

Or call Adam with the AEROS directly at 713-361-7946 and he’ll help you out.

 

Thank you for your continued support.

Finally….an update

I KNOW that it has been 6 weeks.  And I know I said i would blog more, but I may have been overly optimistic!  I hardly have time to check e-mail these days.  I will fill you in on the family happenings, and then I will fill you in on all of the incredibld things Katy has been up to.

Arielle is growing so fast!  She is “furniture surfing,” (pulling herself up on the furniture and walking while holding on to things) and she has skipped baby food all together.  She still has a couple of bottles a day, but eats anything we put in front of her!  She is quite the character, and LOVES, LOVES, LOVES music.

Jake is in 1st grade, and doing well.  He has had a few friends over, and his room is the closest to being unpacked of anyone in the family.  He is taking mixed martial art classes 3 days a week, and we have all noticed how much these classes have helped him go back to the “old Jake” that we all knew. 

Amber is doing very well in school.  She is also being a huge help with picking up her brother and taking him to MMA practice. Her homework load is heavier than it has ever been, but she is keeping up with it. 

The new house is great, but is still filled to the ceiling with boxes!  We are getting it done one day at a time, but it is a daunting task to try and organize while I am working and both kids are in school. 

I want to say “THANKS” to Atascocita Methodist Church for all of their hard work in the yard, and building ramps for Katy.  Thanks to Marion for all of her AMAZING efforts in getting paint, doors widened, coordinating volunteers, etc. 

A HUGE “congratulations” to our friends Sarah and james on the birth of their first son!!  I’m still waiting on pictures…hint, hint.

Oh well, I have saved the best for last.  So much has happened with Katy, that it is hard to know where to begin.  Katy started September by doing the castings for her leg prosthetics.  Her “stubbies” are short prosthetics, with no knees, that are low to the ground, for safety.  We were particularly excited about this development because we were told, initially, that she wouldn’t be able to be cast for legs for another 6 months to a year because of her wounds.  Well, in typical Katy fashion, she healed quicker than anyone could have imagined. 

Katy did 3 weeks of in-patient rehab at TIRR.  The folks at TIRR were above amazing.  Katy did occupational therapy, physical therapy, and function groups.  Aside from her daily work outs practicing getting up, rolling over, sliding in and out of her wheel chair, etc, she also painted a bird house, painted some wooden kitties, played table tennis with a balloon, changed the diaper on a baby doll, drove her own wheel chair all over the hospital, and kneeded dough!  She also, in spite of the doctors saying that no one walks in the first 2 weeks, walked on her first day with her legs!  By the end of her stay, she walked 60 feet unassisted! 

Since returning home, Katy has done some cool things.  Last week she drove her chair to Jake’s school and picked him up….he was SOOO excited to see her!  They are so cute together.  He sits on her lap and gets to drive her around.  It is truly a sight to behold.  Today, Katy put up the silverware from the dish rack.  She is doing so well, and I am so proud of her. 

Last week, Katy and I got to attend the Case Managers Association meeting in Houston.  Ted Muilenburg was giving a talk on prosthetics, and focused on Katy’s story.  Katy got to get up and answer questions.  The people were so nice, and Ted, as always, did a great job.  Wednesday will see Katy talking to students at a school about what she is doing to overcome the loss of her limbs.  Again, I am proud of her.

Anyone who has followed the blog from the beginning will know the name “Dr. Purdue.”  Sadly, Dr. Purdue was killed by a drunk driver a week ago.  Katy, the kids, and I drove to Dallas for the funeral.  I would like to say that, in my limited time knowing Dr. Purdue, that Dr. Gary Purdue was the type of man that the world needs more of.  He was a skilled surgeon, as we know, but he was also a great man.  During the service we learned of his commitment to his family, his patients, and his staff.  Every day, around 2pm, I would wait in the hall of the 6th floor for my meeting with Dr. Purdue.  For some unexplainable reason, he had a way of giving me information in a way that made me trust him.  As you know, I was not the most trusting of the doctors, but I always felt good about his advice.  He was caring, informative, and respectful.  Both Katy and I feel grateful for his work, and, at the same time, feel sad for all of those he will not be able to help.  Rest in Peace.

Thanks, again, for your patience with me in not writing my blog.  I will write as I can.  Our family will forever be grateful to you all.  Even if all you did was read my ramblings, at least we felt like weren’t alone in this.  Thanks you.

Love to all,

Al

I know it has been a while….AGAIN.

Where to start?  SOOO much has happened in the last few weeks.  First the good news…..we got the house!  We are still in Kingwood, and still close to all of our wonderful friends.  Jake and Amer started school again, and Arielle is 6months old, says a few words, has 2 teeth (and more coming in), and is crawling all over!  All of this has been happening while we are moving, or at least starting to move.  The BIG push for moving will be this weekend.  So if anybody is in the Kingwood area with a truck, trailer, or just a strong back, we need you!

Katy has been fitted for her leg prosthetics!  Her wounds are healing so much faster than anyone could have guessed, and everyone, from the doctors on down, are amazed by her healing.  Her hip still gives her a lot of pain, but we are working through it.  She stood up on Monday, with the help of the prosthetists and her nurse, but it is still the first time she stood up since February.  She is supposed to be entering TIRR’s rehab center on the 12th for her 2 week boot camp.  I would like to say a HUUUGGEEE Thanks to Ted Muilenburg, and all of the staff at Muilenburg Prosthetics.  These folks are like family to us now, and the attention to detail, and Katy’s needs, goes WAY beyond what was expected.  They are great people, and we feel blessed to have gotten to know them.

Now for the $h!t we have been dealing with.  The wonderful folks at the Social Security Administration have started sending us letters telling us that if we don’t turn in certain paperwork that Katy will be declined for future SSI, and no longer received Medicaid.  The thing is that the papers they are requesting have been turned in TWICE before.  Now I am running around collecting copies of taxes, bank statements, and trust documents, all of which have been turned in before.  I asked how on Earth they could lose documents containing such pertinent information such as social security numbers, birthdays, legal names, etc.  They have no good answers.  I have contacted an attorney, and we will be requesting another case manager.  I do not feel as though this person is competent at their job, and I fear that relying on this person for my wife’s medical needs will only result in bad things. 

That is the news for now.  We will be having a house warming party soon, so keep looking for posts.

Love to all,

Al

Mid week update

The delay in writing, this time, has been due to computer problems.  I hope to have them all resolved VERY soon!

The exciting news is that the inspection went very well, and though there are things that need to be done to the house, we are moving forward with the closing!  Yeah!!  Katy, the kids, and I are so excited about the house.  We all wanted to say a big THANK YOU to all of you who have donated your time, money, and prayers to help us.  We are one step closer to having a home that allows Katy complete access to all of the rooms, and, thankfully, keeps us close to all of our wonderful friends in Kingwood.  We are planning on having a big house warming party as soon as all of the repairs are done, ad we have moved completely in.  If anyone knows anyone who is skilled in the following areas, we need help with ….

ROOFING

AC INSTALLATION

PAINTING

WIDENING DOORWAYS (2)

BUILDING RAMPS

I am pretty handy with tools, and so are a few of my friends, but the roofing/AC work will require someone with more experience than I have.

In the last week and a half, Katy has been getting out and about more and more. She had a very sweet MOYC get together at Sharky’s.  I know it meant a lot to her to get to have a great dinner with all of her friends!  She is getting more proficient with her prosthetics, and was able to use them to move pieces in a wooden puzzle, feed herself a carrot, and even signed her name again!  We also went for a family walk to Krogers where Katy operated her power chair all by herself!!  She drove herself to the store, around the aisles, and back…we were all so proud!  Another piece of good news is that, thanks to the nice people at Northshore medical supply, we may have found a solution to her ostomy problems.  The new bags seem to be working great, and that will save us several dollars a month.

TO THE PERSON WRITING NASTY COMMENTS ABOUT ME – DON’T HIDE BEHIND A FAKE NAME.  WRITE ME USING YOUR REAL E-MAIL ADDRESS.

I will write more as soon as I get more info on the house, etc.

Love to all,

Al

Wednesday Update

Katy was seen at TIRR today to check on her wound status, and to determine a time frame for her inpatient prosthetic training.  Her wounds are looking so much better, and the doctor wrote orders to change the wound care process again.  If things keep progressing as they have been, then Katy will be cast for leg prosthetics, and then do her 2 weeks inpatient training, sometime in September! 

We have the inspection on the house tomorrow…wish us luck.  Provided that nothing major is found, then we will close soon, and start renovations immediately after that.

I will keep you all updated as things progress.

Love to all,

Al

A small piece of good news….

Our offer on the house was accepted, pending inspecion!  Wish us luck on the inspection.  More to follow…

Love to all,

Al

11 Years Ago….and some exciting news

11 Years ago tonight, Katy and I were in our RV on Lake Travis, in Austin, TX, and it was the night before our wedding.  We had our rehearsal at the church, and then the rehearsal dinner at this quaint little 50′s diner on the square in Georgetown.  The next morning, I got up early to go and get the tables and chairs.  Our families heped make arrangements for food, decorations, drinks, etc.  My friends’ band played at the reception.  It was truly an event put on by many, all for us.  I have seen some lavish weddings, but I could not have been more pleased with ours. 

As I reflect on the last 11 years, the good and the bad, I know , WITHOUT A DOUBT, that I would do it all again.  Even if I knew what was to happen, I would travel our road.  Katy has been the best thing to happen to me…even when I have fought tooth and nail to say she was wrong!  She has helped to balance my inner turbulance, and somehow convinced me to at least come home to the same place now and again. 

We went out today, and enjoyed a fabulous lunch (thank you so much to Italianos), and went and saw a movie tonight.  Everywhere we go we get stopped by people telling us that they follow our story.  Thank you all.  I have to admit that I wonder why so many people follow our lives.  I have spent my whole life trying to be famous, and, in this situation, I feel weird when praise is heaped on me.  I feel that I did that only thing that there was to do.  It was as reactionary as flinching when something surprises you.  Whatever the reasons, I appreciate all of the kind words.  I know I haven’t been blogging lately, there hasn’t been a whole lot going on, but I will now have A LOT MORE TO WRITE ABOUT.

TELL ALL OF YOUR FRIENDS TO START READING THE BLOG AGAIN…A BUNCH OF EXCITING STUFF IS HAPPENING

I have had umpteen million requests to turn this ordeal into a book.  Nothing has been signed into contract yet, but I have been approached by a publisher.  I will update as we hopefully solidify a deal.  I am also planning on releasing more music very soon, at least by Christmas, and I have a new music project that I am very excited about!  I feel positive that this evolution of my recording/performing band will be out in full force this year.

We made an offer on a house!  We won;t know if the offer is accepted until next week, but we are at least moving forward.  The fundraising, though not as much as was hoped for, did allow us to start looking.  We hope this house goes through.  It meets our needs, and would need a lot less modification than others we looked at.  Wish us luck!

Katy might, depending on administrative nonsense, go in to do her 2 weeks of in-patient ptosthetic therapy on August 20th.  Though I hate her being gone, and she HATES being anywhere but with her family, we both know that this will help to advance her use of the prosthetics, and her independence.

Jake, Amber, and Arielle are all doing well.  School will start before they know it, so we are trying to let them have a final blast of fun before the real world crashes down on them…and me.  I report back to Pin Oak soon, and am REALLY looking forward to this year’s stage band and percussion classes.

KATY UPDATE—–Katy fed herself a Hershey’s bar with her prosthetics AND signed her own name on a document!! Though this may seem minor to most, it is a huge step forward for Katy.  I am SO proud of her!

I WILL WILL WILL write more very soon, and you can expect to see more blogging again.  I am so looking forwrd to the next 11 years with Katy…especially 2012 when we renew our vows….and you are ALL still invited!

Love to all,

Al

Sunday…..Family Time

The last week has been busy, but all for good reasons.  The kids did a great job recording their songs, and Jake was elated to have so many kids running around!  We had a nice little listening party to unveil their song, and then we (the family)  enjoyed some quiet time. 

Katy and I have been trying to coordinate our schedules for the next week.  We have a lot going on, including a visit to adjust her prosthetics, and I may have a recording project starting.  It is really nice to be able to do something productive while still being at the house. I am still working on my CD, and hope to have it released by Christmas.

Arielle is growing so quickly!  She held herself in a sitting position for almost 10 minutes this morning.  She is eating a ton, and, as usual, is always happy.  She is starting to teeth really badly, though.  Thank God for her teething rings!

Amber is on her way back now.  It will be good to have her home! 

I will write more soon.

Love to all,

Al

Weekend Update…All Quiet on the Katy Front

Sunday is here, and all is well.  Katy, the kids, and I have been hanging out around the house, except for Amber who is on her way to Arizona as we speak.  As much as I am looking forward to going back to work, I will REALLY miss all the time that I get to spend with Katy and the kids. 

This week will be pretty quiet…at least as far as medically.  Katy will keep up her workouts, and will continue to have her wound care nurse visits.  The house, on the other hand, will be noisy!  I am having a few of my students come over all week to record some original music.  I will let you know where you can here these future hit-makers at the end of the week.

I will write more soon.

Love to all,

Al

Reasons for my delay in blogging…..

Before I get started, let me apologize for the delay in writing.  So much has been happening.  I keep meaning to write, and then, by the time I get done with everything, it is way too late!  I apologize for the delay, and I will try to catch you up on everything that has been going on.

First, the Night at the Museum event was AMAZING.  The amount of work that went into it was enormous, and all of the people that worked so hard to put on the event have our gratitude.  I met/saw so many people as I walked around, and I even got to catch up with an old friend from high school (wel..we aren’t OLD..just haven’t seen her in 17 years!).  Sharon Montgomerry, the string players, Lisa and Chris, the kids, and Rick Lee all did a fantastic job entertaining the crowd, and our MC’s did a wonderful job of keeping the event rolling.  Thanks to you all.

As you probably have read, Katy was in the hospital last month for elevated BUN and potassium, and for low sodium.  Since then we have been to the doctors a few times to keep an eye on these levels.  She has also has been working hard to learn her prosthetic arms.  The arms require quite a bit of shoulder strentgth and flexibility, and she has a workout routine she does while wearing them.  She will be getting her first legs once her wounds finish healing on her lower extremities.  The wounds are doing very well.  Just to clarify, “well” is a relative term used in the context of how serious her wounds are.  The wounds would probably freak out anyone who would see them for the first time, but, believe me, they are have come a LONG way.

Amber has been a huge help with everything from watching her brother and sister, to running errands for the house.  She has continued to work on her origami, and is starting to write again.  She is leaving this week to go visit her cousin in Arizona for a few days, and then, when she returns, it won’t be long until school starts again. We are so proud of the young lady Amber has become.

Jake has been trying to keep busy.  He has been going to a few classes a week at the montessori school, and has gone swimming with friends as much as possible.  You should have seen him in his shirt and tie at the museum..he was so cute!  He is has been helping to feed Arielle, and helps around the house by taking out the trash and letting the dogs in and out.  I know he can’t wait for school to start again.

Arielle is still fat, happy, and spoiled.  She has started taking oatmeal mixed with her formula, and is still sleeping all the way through most nights.  She is making tons of new sounds, and has even started laughing differently, in more of a toddler voice.  She has figured out how to grab and pick up things, and can scoot closer to whatever she wants to “eat.”  You should have seen the look on her face when she figured out how to throw things! 

The back and forth with the SSA/Medicaid is still going on, but some progress has been made.  There is still administrative confusion from time to time, but it is getting a little better.  The doctors are another story.  One doctor inparticular has been causing us grief.  He requested that he see Katy again after her time in the hospital.  We went to see him, and his receptionist didn’t want to let Katy in to see the doctor because Medicaid has never sent her a card.  We had her number, and her ID, but this receptionist, who I told the situation about the card in advance, decided to give us a hassle.  We finally got in, and then were made to wait for over a half hour for the doctor to come in.  When he did come in, he just asked that we go to a diagnostics lab to run some tests in a week and a half.  We made our appointments for the diagnostic lab and the doctors office, and went home.  Fast forward 9 days, and we went to the lab for the tests.  The lab said that they couln’t do the tests on Katy because they were not equipped to draw blood from someone with quad amputations.  They said that she would have to go the hospital and schedule the tests.  I called the doctor’s office to ask if we could schedule the tests, and the receptionist said that we would still have to come in to see the doctor first.  We loaded up and went to the doctor’s office the next morning.  This time the receptionist refused to let us in.  We called Katy’s PCP and was advised to go to the ER, and that he would arrive a few minutes after we did.  We went to the ER at 4:00pm.  The admitting doctor (who was very nice) said that if the test showed any elevated white blood cells, that they would keep Katy for 24 hours and give her some antibiotics and a prescription for more.  They ran the first tests, and Katy showed no signs of infection.  Since there was no reason to keep her for long, they just were supposed to keep her until 10pm, run her lipids test, and then let her go.  Nothing is ever that simple.  Once 10pm rolled around, the lab tech wasn’t sure how to take the blood from her line.  Then, after the results came back, the nurse, who didn;t know how to deal with the ostomy, said she couldn;t take the line out, and that Katy was supposed to stay until the next day.  After talking with the charge nurse, it turns out that the nurse is the person to remove the line, and that the doctor (one of THREE doctors that NEVER SHOWED UP) wanted Katy to stay.  It appears that, since he didn’t have the time to make it in to see her, he wanted her to stay until the following night so that he might be able to make it in to see her.  That was unnacceptable, and we left at almost 1 in the morning.  We will make an appointment with a doctor for a follow up.  It is unbelievable to me that they subjected Katy to 2 eight hour fasts in a 24 hour period because one of three, all of whom were all rounding, couldn’t see her in a 9 and half hour period.  I filed a complaint.

While all of this has been going on, we have also had Katy’s mom and sister visiting, and dealing with the repairs to the van.  I don’t remember if I wrote about this, but the van broke down South of Houston, and has been at the shop for 2 weeks.  I picked it up today.

I PROMISE to try and write more as things happen.  A lot of our days consist of routine events now, but I will post changes, and baby updates as they happen.  Thank you all for your patience.

Love to all,

Al

Monday…A New Week

Was it just me, or did today not feel like a Monday?  I can’t tell if it felt lie a Sunday or a Wednesday, but not a Monday.  Oh well.  We had a good day, and enjoyed the comapny of some of Katy’s friends that visited.  We also got to make a new friend from North Texas, who came by to meet Katy.  It was a good day.  In all of my confusion, though, I left the windows in the car down and it rained!  I’m sure people were staring at the huge wet spot on my pants as I walked around the grocery store! 

Katy has been doing well.  Physically she is getting stronger all the time.  Emotionally, she is coming along.  She still has her sad moments, but we get through them together.  She takes solice in monents, like tonight, where Arielle lays on her, and Katy can now cradle her with her legs and arms.  Arielle just looks at Katy and smiles!  They are SOOOO cute together.  Katy cried while we were at the beach.  She said she was so happy to be there!  She said that it hit her, while watching the kids perform, that she was in “critical condition” 2 months earlier.  That night she was sitting at our favorite bar, drinking a dragonfly, and watching the kids perform….just like any other year.  She was so happy to be there.  It does wear on her, I can tell, to have to have others do things for her.  She is working hard to gain her independence again, but I know she gets frustrated sometimes.  Most of the time, we try to have as much fun as we can.  We have spent a lot of family time, and I KNOW that Katy loves that.  Tonight, we watched Happy Gilmore while Jake and putted golf balls in the living room.  Katy was cracking up as Jake turned from golf to boxing after watching Bob Barker and Adam Sandler fight!

Tomorrow will be a super busy day, but I wanted to write a quick update.  In answer to some messages that I have not had time to reply to (Malinda ) .  Dress blues are perfectly fine to wear to the museum event, and to anyone who might have had trouble paying for tickets with a credit card, it should be fixed now.  Also, all auction items are tax deductions!  That was news to me, but very good news to all who want to support the event.  Thanks, again, to all of you for all of your support, and for all of the kind words.

Love to all,

Al

Weekend Update….some fun

Sorry, this will be a short update.  Katy and I just returned from a night on the beach.  We went down to Surfside to watch the Rock N Roll Band Camp performance concert, which was AWESOME, and then hung out with some of our very dear friends at their beach house.  Though Katy can’t go in the sand and water, we were able to shoot around the beach on a golf cart, and then she relaxed surrounded by friends.  It has been a good 2 days.  Katy has been getting more, and more, excited about the July 10th event.  She is so excited to see everyone, and to be at the museum (one of her very favorite places).  I will write more soon.

Love to all,

Al

Wednesday…PLEASE READ

Hello to all of you in “blog land.”  The last few days have been a whirl wind!  Nothing too good or bad, just busy.  Katy is in great spirits, and is looking like her old self….at 104 pounds!  She still has 3 open wounds (the sacrum is all but closed), and is getting regular wound care.  It is UNBELIEVABLE how many “extras” there are to purchase for wound care/medicine, even after what is “covered.”  I spend many hours a week running around to get the correct wound care products, medicines, and even clothing that doesn’t cause her to suffer.  She still gets very hot, even when her body temp is normal.  It is a tough job to find clothing that doesn’t interfere with her wound/bandages, ileostomy, keeps her cool, and lets her move without flashing the world!

I don’t want to be redundant, but I am going to answer some questions sent to me via my e-mail.  The prosthetics are going along nicely, and I know Katy will learn how to use them as quickly as anyone, but there is WAY more to the story than that.  I didn;t know this before, but there is a bit of maintenance, replacements, and parts to all prothetic limbs.  Quadruple amputees face more of this than do single amputees.  Also, though there have been amazing strides in the technology, it is still generally true that the more advanced the prosthetic, the more sensitive it is.  Katy is being fitted with body powered prosthetics on her arms.  These are the basic hooks, and will also come with hands.  I will use a wrench to switch out between the hooks and hands as she desires.  These are operated by the wearer pushing/pulling on straps that hold the prosthetics on, and those straps, in turn, pull on cables that operate the spring loaded mechanisms.  The cables are basically throttle cables (like the cables used for brakes on bicycles).  These can be adjusted, they do break sometimes, and the straps can be adjusted too.  The arms and hands can get damaged by impact, sun, water, falling, etc.  The hooks are bit more durable, but still wear out with time.  The wrists, that allow her to bend the wrist and feed herself, also wear out.  From what I have been told, prosthetics have to be changed (depending on the number of types of limbs, uses, etc) every 3-5 years.  Along with that, there is the need to replace padding for the skin, the “socks,” and all sorts of peripheral items. 

Another thing to know is that, during the 1st 6 months or so, the body goes through drastic changes in shape due to the use of the new limbs.  Some people even said that their skin color changed!  After 6 months, the body stops changing so quickly, and the outer skin of the prosthetic can be matched more close to the wearers skin tone and body shape.  All of these things add up to, depending on the prosthetic, a LOT of money! I hope this answers the questions that some of you have e-mailed me?  Let me know if you have anything else you want to know.  It helps me to write more when I have things to write about.

The night at the Museum event on July 10th is shaping up nicely…..event wise.  I know that most people wait until the last minute to purchase tickets for these types of events, but it would be SOOOOO HELPFUL if we could get a good head count in advance.  Though it a charity event where 100% of all proceeds go to Katy, it still costs money to put on.  The more accurate the head count in advance, then the better chance of the event not wasting any money that could go to getting Katy the best limbs for her needs. 

 That word, “need,” has really hit home lately.  As Katy’s husband I want to see her be able to do all the things she wants to do.  She has so much to offer the world, and I feel that it would be a shame if something as simple as money stopped her from being able to feel productive.  When I say “productive,” I don’t mean just to feed herself, or brush her teeth.  Those things can be worked out in much simpler ways.  Katy and I have taken a lot of pride in never having taken ANY money from any form of assistance.  I never took grants, student loans, unemplayment.  Katy hasn’t either.  We have always loved to work, and usually overloaded ourselves with it.  We payed for Ariell’s birth, in cash, with money we worked for.  We have been advocates for hard working, small business owners, and have opted to make a little less money just to be able to be a bigger part of our childrens’ lives and our community.  When I talk about Katy’s needs, it is more than the required skills to function at base level.  I mean to say that Katy will be capable, in spite of this, to not only work, but to enrich the lives of others while doing so.  She has an amazing mind for natural medicine (I have been her patient for 11 years), and she is a huge proponent of naturally grown foods.  She wants to teach kids about plants, she wants to learn more about herbs, oils, massage, energy work, cooking, jewelry making, glass, teaching, and so many other things.  One day I was wondering why some people, who have all of their abilities, do so little with their life, and why Katy, who has the desire to do so much, had her limbs taken from her.  Then I remembered…………….

“Great people do not do great thing.  They overcome great obstacles to do great things.”  Katy is a great person.

I hope that as many of you will come to the event on the 10th.  Though we are in a time of need, that is only one reason.  I would like for those of you who do not Katy to meet her.  If it was an event for our friends, we would not need to use the HMNS, we could have a party in Kingwood…and should very soon!  This event will be a wonderful chance for Katy to meet all of you who have given so graciously.  It will also be a wondeful chance for all of you to meet, and get a glimpse of, the real Katy…not my words on a blog with some nice pictures, but the wonderful, shining, and unstoppable Katy who is my wife, lover, friend, and my hero.

Love to all,

Al

Weekend Update….HOME!

What a great father’s day gift!  Katy came home around lunch time, and is doing great!  She has a few antibiotics to take, and a new set of wound care orders, but she is in great spirits.  The frustrating thing is that we know the culprits that made her feel bad, but not the root causes.  We still don’t have a good explanation for why she was so sympomatic while sitting up, and several other questions, but I think we have made some adjustments that should help to prevent a recurrence.  We also have several follow up visits scheduled with the doctors to monitor all of Katy’s levels. 

First, I would like to share some good news.  A while back, as you may remember, Katy had an EF (Ejection Fracture) of 12.  A normal woman should have an EF of 55.  When we left Parkland it was at 31.  The cardiologist did an ECG of Katy and found her to have an EF of 55!  The meds she was on for her heart were not doing her good, and may have been harming her, due to her recovering MUCH quicker than anticipated.  This helps to reinforce that her heart failure was secondary to her other conditions, and not the other way around.  She is currently NOT taking any heart meds.  YEAH!

I want to address something that has been on my mind the last few days.  I want to talk briefly about what happened in te ICU the other night that caused me to put restrictions on visitors.  A friend of ours was apparently (I didn’t see her until the last minute) waiting to see Katy.  I had asked for all visitors to contact me to schedule appropriate times.  The reasons for this were many.  The primary two reason were that there may be procedures scheduled that change when we can, and cannot, see Katy (that happens regularly), and the other reason was so that family was alotted time first.  One time, while Katy was in KMC the first time, I went to go in to the ICU and was stopped by staff. I was told that she already had her max number of visitors and that I had to wait.  The hour came, and went, and then her friends came out.  They said they were waiting for me to come in, and that, since I didn;t come back, they figured they could just stay.  To top the experience off, I was told the doctor had already left and he had given all information to those that were there.  This person showed up, unannounced, and then barged in on another of our friends’ time.  She procedded to bombard Katy with questions, and, when I reminded her that she needed to please contact me in advance, ignored me to continue asking Katy questions.  She proceeded to offer to take the kids, go by the house, etc, all while I am there.  As the father of the family, I had already made all of the arrangements, and had relatives coming in to help.  When I stated that she needed to talk to me about these things, she started yelling about wanting to make sure that Katy had a voice.  I can assure that Katy has a voice, uses it, and I execute her wishes.  However, while she is recovering in an ICU, with still undetermined causes, still in pain, and still unable to eat, that is a COMPLETELY inappropriate time to go to her for that information.  Also, aside from the complete lack of respect for my role in the family, there was no consideration made for the fact that I already had 2 people rearrange their personal schedules to come help.  That, and if anyone thinks that I don’t want Katy to be independant, they would be wrong.  I will do whatever Katy needs, for however long she needs, but I would much rather that she could get her own drinks, scratch her own nose, answer the phone, change the TV channel, brush her own teeth, change her ostomy, etc.  I’m sure she would agree.

It bothered me immensely that someone could be so insensitive during these difficult times, especially comeone claiming to want to “help.”  I stewed over it for a while, and then (after talking to a few of our friends) came to what I hope is a reasonable conclusion.  With the exception of those few people who read the blog, or we know, that have a seriously ill person in their life, most of the world has no idea of what it is really like.  The only reason I am mentioning ANY of this is to prevent future occurences like the other night.  I think, based on talking with several people, that most people think that, because Katy is home, that she is fine.  I don’t think that they realise the level of daily care still needed, and, when they ask, we say that she is fine.  She is fine.  At least she is well on her way to being fine in the new definition of the word.  She still requires a LOT of daily maintenence, and, due to reason of dignity, I do not share all of what is going on with her to the world.  I think that, because of that, some people view that as her being secluded by me.  Katy made mention of feeling couped up.  I start getting phone calls immediately afterwards about why I’m not letting her go out.  If they only knew.  I spoke with Katy about this, and she was amazed that people would take her comment to mean that I was responsible for her feeling couped up.  She was feeling that way because she wasn’t feeling well enough to leave the bed.  She smile and laughed for the benefit of friends, she stil has her pride, but felt horrible inside. 

The other thing that has happened is that many, many people call/write me with the SAME suggestions, and then the follow up, and then the 2nd follow up to their questions, regarding Katy seeing a psychologist, wound care, herbal remedies, etc.  Once again, most of this is not being discussed openly because we would like to keep some things to ourselves for our own reasons.  It is more difficult than one might think to write so openly about my wife, our kids, and our life.  I focus on the positive, and I try not to let the dark thoughts see the light of day.  I am aware of how many people read this, and I do not want to spread any more bad into the world.  I have chosen, and Katy agress, to use my forum to spread information about this experience, and to try and stay as positive as possible while going through this.  That being said, I know good and well that Katy needs a psychologist, what most of the alternative remedies are, and that so many people would love to come over and help.  Unfortunately, the process for the psych doc is a long and twisted road compounded by the Medicaid system.  Before anyone offers to help with Medicaid, you can’t.  New rules put in place make it where it is difficult for me to do it, and they no longer allow 3rd party advocates.  I spent 18 hours, in one week, on the phone with them.  I am aware of what herbal remedies there (we are friends with a wonderful naturopath), and she knows that we cannot do much with them due to the meds Katy is taking.  Lastly, though it is wonderfully sweet all the offers we receive to help, we are all a little overwhelmed, and more people doesn’t help that.  Which leads me back to my original point.  Katy and I LOVE, LOVE, LOVE to have visitors to Hotel Hayes, and love to see frinds while in the hospital – though we are hoping for no more hospital stays, but we must ask for understanding, and respecting, OUR wishes to schedule your times through me. 

I also wanted to say “THANKS” to some people I haven’t thanked yet.  I want to thank YOU.  I don;t always get to reply to the comments made.  In fact, I have over 1100 e-mails I am trying to return.  I DO read all of the stories that are posted, and I am deeply touched by people’s willingness to share their own experiences with us.  I think of all of you often, and I share your stories with others who may benefit from them.  It means so much to me that so many have been willing to write to me, even once, to say how they felt about what Katy is going through.  In all of my running around (physically and mentally) I sometimes for get to mention someone whose story touched me, but all of your shared life lessons have been received.  Thank you for allowing us a view into your life as you read about ours.

I realize that I haven’t shared any stories about Katy in a while.  It gets hard to think sometimes.  I used to stay out all night, sleep for two hours, and then work all day…and that was in January!  Lately, it seems I am running on empty at around 9:30pm.  Here is a funny little happening from our stay at Parkland.  Katy was haveing the issues with her lungs, but at this point the docs weren’t sure what it was.  Katy was awake, and had kept her memory for about 3 days.  She was aware of the amputations, and was cracking all kind of jokes!  I do love her sense of humor.  A new doctor came into to examine her, and you could tell he was a little unsure of how to talk with her.  He introduced himself, and touched her on the shoulder.  She says, “what, you’re not going to shake my hand?”  Then she extended her bandaged arm.  He did shake her “hand,” and he immediatley lightned up.  It was hilarious.  Another time, we were driving with a frind, and the friend was saying that he hoped that the fund raiser would allow us to buy a house.  Katy said, “too bad houses cost an arm and a leg these days!”  Then she busted out laughing!  I am laughing while I type this.  She cracks me up.

I will write more soon, and thansk for all of the comments!

Love to all,

Al

Wednesday…closer to normal

Is it really hump day again?  Time is still a blur!  Katy is doing much better today.  She is still on several meds to keep her levels stable, but they are reducing the levels as she is maintaining more on her own.  This whole thing has been strange in many ways.  Katy has had a mostly fluid diet, that has plenty of sodium and electrolytes, and has urinated normally, yet was said to be dehydrated.  I am wondering if the colonectomy is playing a role in this.  I have read that the majority of fluid absorbtion in the body occurs in the large intestine, and, with Katy not having one, if this could cause her to not absorb the nutrients and fluid needed?  I will be addressing these, and many other, issues tomorrow.

Katy has been in great spirits all day.  Her smile is so infectious!  She was hungry today, but had a little trouble with the food that was given.  They have reduced her meals to more fluid based foods, and will increase her solids as she can tolerate.  I have several meetings planned for tomorrow to discuss all of the possibilities, and options, for the next few days.  Time for more wait and see.

All in all, today was good.  The only thing that was disturbing was an uninvited visit from an aquaintence to Katy’s room.  I have asked for anyone wishing to visit to contact me to schedule an appropriate time for visiting. There are so many things happening right now that at certain times, though we would love to see everyone, it would be counterproductive to have guests. Also, due to some of Katy’s current conditions, there exists the possibility for some uncomfortable, and/or embarrasing, situations. This person showed up, without benefit of a call or text, came into the room uninvited, and then created friction.  As a result of this incident, I have closed (officially with the hospital) visiting to anyone without myself, or our family present to approve, and monitor, all visits.  I have no idea what this person was thinking, but I was in complete disbelief at the audacity to barge in and presume to act as this person did.  I am sorry if this presents a problem to any of our friends, but I don’t think it will.  I am present at all visits that would be appropriate for visitors, so I am sure no issues will arise.

I will continue to write as more info becomes available.

Love to all,

Al

Tuesday/Wednesday Back in the ICU…

Katy started having trouble breathing yesterday, while I was on errands, and we called 911 to have her taken, by ambulance, to the hospital.  After several tests were done, it was found that her potassium was high, and her sodium was low.  Her blood pressure was low, but her heart rate, breathing, and pulse/ox were all good.  There is a lot of possibilities as to the cause, but we are still waiting for the results of the blood cultures.  Katy did feel better with the fluids being given to her, and ate a hearty meal late last night.  I met with the attending doctor, and the GI doctor this morning, and we are just waiting for cultures and labs.  She will stay in the hospital until we can be sure of what has caused this, and then we will continue treatments at home.

In typical Katy fashion, Katy’s numbers were almost opposite of her state of being.  When her blood pressure was normal, she felt horrible.  When her pressure was low, she was laughing and watching TV.  It is a very good sign that she has an appetite, and that is producing urine.  She actually never stopped urinating, nor did she have a reduction in the amount, but her kidneys were diminished last night.  She also had a high blood-uria level.  She seems to be responding well to the antibiotics, so i am hoping that this is a simple case of an infection and not Addison’s disease, or secondary adrenal failure.  No matter the culprit, we will have a the nursing company start monitoring her blood while doing wound care.  I’m not sure why this was not the case, since she was so closely monitored in the hospital, and I did ask if she should be monitored, but we will move forward with more close monitoring when she returns home.

Thanks to all of you for the barrage of messages I received wishing me a happy birthday.  I wish my day didn’t involve a trip to the hospital, but I still count my self lucky to have my Katy! 

I will write more as information comes my way.  Please, I must insist, do not visit Katy without FIRST contacting me and confirming a time that is appropriate.  Thanks, again, for all of your love and support.

Love to all,

Al

Sunday…A day of rest?

I want to start off by saying “thanks” to all of you who were able to show up to Katy’s party, and to those who were there in spirit!  Katy was surprised, and her tears during dinner were, as she put it, because “I am so grateful!”  She is the strongest person I have ever met, and she continues to amaze me through this whole process. 

We did a have a VERY scary event occur on the way to the party.  While slowing to stop at a red light, Katy propelled forward and landed on her face in the van!  Apparently, her seatbelt had been taut, but partly trapped under her wheels.  When the weight shifted, she came loose and fell forward.  I was HORRIFIED!  I pulled over, and got her in the chair again.  She was scared, but pulled through.  I thought I was going to have a heart attack, I was so scared.

The event for July 10th continues to grow.  The efforts of those working on the event are unbelievable!  If you, or anyone you know, is interested in attending, please contact us at www.katyhayesfund.com ASAP.  The event will be worth double the price of admission even if you don’t know Katy.  The auction items are spectacular, and all of the funds go straight to helping Katy with her goals, and, hopefully, allow us to buy a house that can be modified specifically for her needs..  I can’t wait to see all of you there!

This week is full of more of the same for us.  Katy is getting better every day, but still has a long way to go.  The learning curve for the body powered prosthetics will be difficult, but I know that Katy will master it soon enough.  I know her spirits will lift even higher when she can start to do things for herself again, and she is looking forward to some more independence. 

On the music front, my song “Wednesday Afternoon” is now on Napster, E-Music, and Amazon.  I am also working on new material for release soon.  I hope to have the entire album out by the end of the year.  Our gig on Friday went very well, but we did miss Katy!  We have another gig this Friday at Castaway’s Bar in Surfside, TX, and then I will be back in my studio (home studio) continuing to work.  I can’t wait to have Katy next to me on stage again!

I promise to write more soon.  Thanks for your patience with me lately!

Love to all,

Al

Sorry…Time gets away from me these days.

A lot has happened since my last visit to blog land.  Thank you all for your patience!

Katy is doing great.  I did fire her wound care nurse due to her not showing up for 3 days, always being late, and taking 3 hours to do wound care, but the company sent a new nurse and she is great.  Katy’s wound care has evolve, and she will only need care 3 days a week instead of 5.  She also went for a second prosthetic fitting, and has another fitting tomorrow.  I know that it will be a LOT of hard work, but I can’t help but be excitied for Katy to keep working towards regaining independence!

A few days ago I woke up with an insect bite on my arm.  It turns out to be a spider bite, and it got infected.  I went to the doctor and got a shot in the butt and a prescription for antibiotics and pain pills.  Today, two days later, I went back.  The doctor tried to drain it, but the infection had become fibrous.  It required a bit of hacking on my arm, and another shot in the butt, but he was able to drain a bit if the infection.  I have the wound packed with sterile gauze, and will have to go back every day until it is healed.  OUCH!

I want to thank all of the people for the lovely dinners that are being brought over!  We are eating well thanks to these nice ladies.  I also want to say thanks to everyone working so hard on the NIGHT AT THE MUSEUM event.  Larry Dierker, former Houston Astro, will be at the event!  I know all of the sports fans I know are excited to meet him. 

Well, the pain meds are wiping me out.  I will write more soon.

Love to all,

Al

She’s a natural

Look at that smile!

Friday….End of week #2

The second week home is coming to an end, and I still can’t find anything in my house!  Everything was rearranged, out of need (and done by love), but O really needed that oven mitt!   Katy has been doing so well the last 2 days.  Her rash came and went, and we think it was a new soap.  Her skin is still a little sensitive.  She has been eating well, and getting all of the protein that she is supposed to be getting to heal well.  She is enjoying all of her time with Arielle, jake, and Amber, and we have been having Arielle sleep with Katy and I.  I think it is so healing for her to have the baby by her side.  She gets to feel close to her daughter, and Arielle gets mommy time.  I gave Arielle her first bath from me, tonight, and have started adding rice cereal to her bottle.  She is starting to hold her own bottle up when she eats.  I was able to feed Katy while Arielle was eating, and I only had to help her with the bottle once or twice.  She amazes me!

The party is on, and will be held at one of our favorite restaraunts.  Due to the seating, I am asking anyone intersted e-mail me.  I have confirmed 30 people so far, and I have room for 35 more.  Please remember…THIS IS A SURPRISE!  Katy thinks my mom and stepdad are taking us out for our birthdays to dinner.  When we walk in, SURPRISE!  I know she will enjoy the company, and the 2 hour window is about her limit for sitting in a chair right now. 

I am pleased to announce that my band will be playing at CASTAWAYS BAR and GRILL in Surfside, TX next Friday (the 11th), and again the following Friday.  I have missed Surfside, Castaways, and all of the beach people that I surround myself with during the Summers.  I know it will be bitter-sweet to play there again.  On the one hand, it will feel great to play.  On the other hand, I will miss having Katy singing with us.  She was singing along while I was practicing, today.  She doesn’t quite have her singing voice back yet, but she is getting stronger every day.  If any of you are in the area on either of the next few weeks, stop by and say “hi.” 

Well, as usual, the house work is easier to do when everyone else is asleep.  More later.

Love to all,

Al

Wednesday…..Hump day

It always seems like so much happens to fill up a day, and then, no matter how much I write, I always seem to forget to write things in the blog that I wanted too.  Today will probably be no exception.

Katy had a rash breakout on her face and shoulders.  We think it was a reaction to a new soap, and we were able to soothe the itching.  We will eliminate everything new, and, hopefully, we will not see it pop up again.  Katy’s family is leaving tomorrow, and we will miss them!  I am writing this on the blog, Katy doesn’t read this yet, so please don’t mention this if you talk with her.  I would like to have a birthday party for Katy on the 12th. It is a Saturday, and I am looking for ideas as to who would like to come, and, based on the number of people, where to have it.  Please e-mail me if you would like to attend.

Once again, projects and work will keep me from writing too much tonight, but know that we are grateful to everyone for their continued love and support.  The next few weeks will see Katy getting closer to getting her first prosthetics, and that much closer to being able to be independent again.

Love to all,

AL

Tuesday…progress

This will be a short blog as I am working on some other projects while the house is quiet.  Today was a day filled with progress.  Katy and I got the Jake off to school, and then did her wound care.  Katy, her sister, her mom, and I then went to Muilenburg prosthetics for her first casting.  Ted Muilenburg is an amazing man who has a great way with Katy.  He is patient, thorough, and caring, and we feel very lucky to have him making her arms.  Channel 13 was there to interview and document the process, and we were able to schedule the next 4 visits.  It looks like Katy will have her first set of arms by the beginning of July!  I am so proud of how she handling everything.  She is a trooper!

A few have asked about my music lessons.  I offer customized music lessons for all ages, levels, and styles, and I offer Summer music camps.  I teach guitar, bass, drums/percussion, beginning piano, ensembles, song writing, recording, and performance.  If anyone wants any further info, please e-mail me at alhayesmusic@yahoo.com.

Sorry for the short blog, but, like I said, this is the only quiet time in the house and I want to take advantage of this opportunity to get some work done.

Love to all,

AL

Monday… Happy Memorial Day

Happy Memorial Day to all of you.  I hope that you have all had a restful weekend, or at least some really good stories to tell as to why it wasn’t restful!  We have enjoyed our 3 day weekend so much that I almost forgot that the kids still have 2 days of school.  Speaking of school…I would like to add a quick aside while on the subject.  It is a core part of how I teach to educate kids on the importance of our language, and how the use of our language can help, or hurt, us in our lives.  While I do not consider myself a master wordsmith, I do hope that I can, at least, convey my thought s fairly clearly.  When I can’t do that, then I resort to writing music! Many classes of mine have included talks about paying attention to what we say, and how, if we are not careful, that can be used against us.  I have tried to inspire more than one to spell correctly, use complex, complete sentences, and to actually think about what they are saying.  Now, a new lesson comes to mind.  I, in lipping channels, saw one more news story about someone leaving someone, again, and how it seems to be the rule and not the exception.  It occurred to me that if these people really knew what it meant to stay with someone “in sickness and in health,” that they might not rush so quickly in to these things.  I’m not bringing up any religious sanctity, or holy vows, rather I am bringing up a legal contract in which two people gather witnesses to swear a lifetime (or longer) of allegiance to one another.  If we so readily break this agreement in our society, then what is our society worth?  Teddy Roosevelt said, in a speech at the University of Versailles in 1910, that the quality of our society, unlike monarchies and dictatorships, would be determined by the quality of the average citizen.  I have seen great qualities in people through this ordeal.  The outpouring of love and generosity has made our family believe in humanity again.  That being said, maybe we can teach our children the value of not making quick and shallow promises, and to keep the promises that they make.  But I digress…..

Katy is doing very well.  Her wounds are improving daily, in spite of nurse that doesn’t show up, or bother to call when she isn’t showing up.  I do her wound care, and her wounds are healing at an amazingly fast rate (though I’m sure Katy wishes it was MUCH quicker).  She is still getting her equilibrium back, and sitting for extended periods is tough for her, but she is working out daily to continue her improvement.  We do have our first appointment at the prosthetist tomorrow.  It will be her first fitting for her body-powered arms.  There will be several fittings before she goes to “prosthetic boot camp” in July (that is NOT its real name….but I call it that), but it still feels good to be doing something other than sitting around the house.  We are both going a little stir crazy being home so much.  It is hard, for two people who love our work as we do, to not work.  The good news is  that I am going to start teaching at our Kingwood home again.  Anyone reading that is in the area and wants lessons, e-mail me.  I will write more after we get back from the prosthetics tomorrow.  Have a GREAT week!

Love to all,

AL

Weekend Update….A 3 Day Weekday

Today was a fantastic, warm day in Kingwood, TX.  The sun was out, the kids were playing, and Katy was radiant.  Katy’s mom took Katy, Jen (Katy’s sister), and I out for a birthday dinner.  We all have birthdays in the next few weeks.  It was Katy’s first time going anywhere since she has been home, and it was AMAZING to see Katy out, and we even went out on the restaraunt’s boat dock and smelled the lake air.  Katy reminisced about riding jet skis in the ocean, and the times we went out on our boat.  It was a lovely dinner with great company.  Arielle was with us, and she was a perfect angel during the whole event. 

The wound care, PT/OT continues every day, and Katy has taken over her own therapy.  She works out her arms and legs, and stretches her back.  It is still very difficult for her to sit up for any length of time, and she gets back spasms and nautious spells.  We are adding a little more time in the wheel chair every day, and tomorrow we are going to add a new therapy….harmonica playing.  I bought Katy a small set of harmonicas and a neck holder.  Tomorrow we are going to try a small jam with me on guitar and her on the harps.  Rock N Roll!

Speaking of music, I recorded a few songs while I was in Dallas.  Part of my nightly therpay was to sit down with my few pieces of equipment and play music.  It helped me to vent, and it allowed me to express the emotions I was feeling when there was no person around to vent them to.  I would create challenges for myself, and then record around those challenges.  One time it was complete improv session.  Another time it was reinterpreting a song by another band.  One Wednesday, Katy was lying in the ICU unconscious.  A few days had passed without much change in her state, and I was emotionally spent.  I couldn’t do anything, and nothing was being done by anyone else.  Her numbers were stable, but not trending in either direction, and, after 4 sleepless nights,  I felt close to mental and emotional defeat.  I kissed Katy at the end of my visit, and I drove to apartment.  Outside was sunny and beautiful.  When I got to the apartment, kids were playing soccer outside my door.  Birds were singing, dogs were fetching, couples were talking on the picnic benches, and I felt the opposite of all of what I was seeing.  I wished that I could help Katy.  I missed my kids.  I wanted our life back, and no amount of strength, threats, or tears, seemed to do anything.  I felt like I was wrestling with the wind.  So I sat down with my guitar, and a chord progression I had written a year ago.  I plugged in and hit “record.”  I played 2 guitar tracks, a bass track, an organ track, and used a generic drum machine rhythm.  I did everything in first takes (no redos), and did the whole thing in about 2 hours.  I recorded in a dark apartment, with the window open and looking out on to the happy scene in front of me.  The contrast of what I saw, and how I felt, stung like alcohol on an open wound, but the more I played, the better I felt.  Though the recording I ended up with is by no means anywhere close to perfect technically, it is the truest representation of how I felt.  It is raw, unedited, and pure.  There are no words, because words could not express what I felt on that afternoon.  I named the song “Wednesday Afternoon.”  I put it on a CD and played for Katy while she was in the ICU.  Now she says that it makes her sad to hear it because it reminds her of those times.  For me, it takes me back there, yet feels like a battle scar I proudly wear.  Though this song will never mean to anyone else what it means to me, some friends suggested that I put out for people to hear.  Earlier tonight I submitted “Wednesday Morning” to be put on several music sites such as Amazon, ITunes, Zune, and others.  It will take 2-8 weeks for it to appear on all of the different sites, I Tunes being the soonest.  If anyone feels the desire to know what that day felt like, this song is the only way I know how to explain.  For anyone who chooses to listen to it, I hope you enjoy it, and please forgive all of its impefections.

Congratulations!

You’re done. Your music is now on its way to the stores!

Single Distribution Wednesday Afternoon Distributed To:iTunes Mexico, IMVU, MySpace Music, Zune, Amazon MP3, MediaNet, Thumbplay, Napster, Shockhound, Amie Street, iTunes U.S., iTunes Australia/N.Z., Amazon On Demand, iTunes Canada, Nokia, eMusic, iTunes UK/European Union, iTunes Japan

I hope all of you have a fantastic Sunday, a great Memorial Day, and a great week!  I will write more soon, and I hope to continue to post music as I can.

Love to all,

Al

What day is it? Oh yeah, Thursday.

I would like to start off by saying how happy I am that we are past all the misunderstandings regarding a friend of mine’s post.  Janet is a VERY sweet lady and is nothing but positive.  I also want to say “thanks” for all of the poems, letters, e-mails, clothes (Randee), and prayers continuing to be sent our way.  It is all of this sweetness, and good nature, that is helping us make it through all of the administrative and financial woes. Thanks!

As is usually the case, the left hand doen’t know what the right hand is doing when it comes to medicaid/ssi, etc.  The costs keep racking up, and the paperwork keeps coming in.  I am AMAZED that I am unable to get ANYONE to answer the phone at the Houston office for SSI.  The phone rings until the phone company disconects it, and I do this for hours a day.  I call other numbers (thanks to all of you who have sent them to me!), and they all tell me I have to call the number that no one answers.  It is frustrating because all I am trying to do is clarify some items regarding Katy’s prescriptions.  Oh well, wish me luck.

In the middle of all of the PT/OT, trying to get enough protein into Katy to prep her for prosthetics, media, family, administrative, bills, etc, Katy and I do things that keep smiles on our faces.  One of the biggest is the dream of owning our own home.  One day, it will be nice to have a place that is ours, and that we can modify for her needs, and for our family’s wants and needs.  I know it will happen.  Katy and I are both raring to get back to work, and miss working terribly, but will have to wait just a little longer.  I have been talking to different organizations that might help Katy decide what she would like to do as she heals.  I know that she still wants to help people, and she will be incredible at anything she chooses.  If any of you have any knowledge of these things, please let me know. 

Speaking of incredible…the Night at the Museum event is shaping up to be just that.  We are still hoping to get a few celebrities and politicians at the event, so, if anyone reading knows anyone, please contact info@katyhayesfund.com.  The event already has great performers, unbelievable auction items, and great food.  It will be a nighht to remember, and it will be Katy’s coming out party! Katy will be there!! On a side note, I will be playing bass with one of the musical acts, as well.  We hope to see as many of you there as we can.  It would be a great opportunity to shake hands/hug you in person!

As we talk about events, I would like to mention one more thing.  We would HATE, HATE, HATE for anyone to take advantage of all of your generosity.  To make sure that doesn’t happen, we have created www.katyhayesfund.com. ANY event that we do will be listed here.  We did that so that no one would use our situation to bilk others of money.  Please check out the site as a means of keeping up with events that we are doing.

As for Katy-there is not much to report, other than she is wonderful!  I have no idea how, after all of this, she can be so beautiful!  We shared a heartwarming moment tonight as Arielle snuggled up with Katy, and then gave Katy’s nose the death grip.  It was so cute to see Arieele and Katy laughing together as the baby held firm to Katy’s nose.  We had a wonderfully delicious dinner (thanks Britt and family), and actually got to sit all 9 of us (5 of us, Katy’s mom, sister niece, and Chris) around the table for a meal.  It is thought provoking how much that means now.  Being self employed has always meant that Katy and I had to keep moving to keep getting paid.  It, most often, led to an abnormal schedule for us both that, at times, didn’t allow us much time to see each other.  This experience has brought us closer, and made us value the little thngs a whole lot more.  I suggest, to anyone reading, that you take the time to put the world on hold and cirlce up the family at least once a day.  We have always been a close family, but, since Katy’s illness, I know that all of us, including me, need these times where we all sit together. 

There will always be people to thank while writing this blog, but three come to mind tonight.  Megan, and the mother’s group from Dallas, kept me fed, and took the time to care about what was happening to another mother.  Ylana, sweet Ylana, who turns out to be a friend of one of Katy’s friends, not only brought food, but kept us in Firefly and Sing Along Blogs to keep us smiling.  Thank you!  One more is Sarah, the band director from Pin Oak.  Not only is Sarah how I ended up teaching at Pin Oak, and she somehow manages to keep me organized, but she has been a thoughtful, and constant, friend to my family in our time of need.  I not only thank her, but congratulate her on the blessing of her pregnancy.  She will be an AWESOME mom!

Love to all,

Al

Please Re-read, and TIRR

For some reason a lot of you have been really negative to Janet.  Her comment was a great one.  All she was suggesting wasd that Katy could sing with our band again.  Some of you may not know that Katy was a back up singer in my band, and that Janet’s daughter is our lead singer.  Katy and I felt nothing but love from this comment.  I know that this situation is really sensitive, and I appreciate the desire to protect Katy, but this was a harmless comment.  I hope you all will understand, and that we can move on.

Today was a BUSY day for Katy.  We started off with the first day of the wound care nurse coming to the house.  Then, Katy did an interview for channel 13 in Houston.  We ate a quick lunch, and then we were off to TIRR for her evaluation for prosthesis.  We fought traffick back (we left TIRR at 4pm, on a weekday, on Houston), quick meal, and then an interview with WFAA Dallas/Channel 11 Houston.  We put the kids to bed, and then Katy was ready to SLEEP!  Luckily tomorrow is nowhere near as busy.

The TIRR appointment went very well.  We had her wounds looked at, got the prescription for her license plates, and met with the whole team.  One of the best parts of today was meeting Ted Muilenburg in person.  Mr. Muilenburg owns Muilenburg Prosthetics and is helping us with Katy’s prosthetics.  We also met Katy’s rehab team, and planned out the details for Katy’s rehab.  I felt very comfortable with everyone, and I feel confident that they will do their best for Katy.

I will now try to sleep.  I know I keep promising to write more, and I will, but today wiped us all out. 

Love to all,

Al

Sunday…Sunny Sunday

Our first weekend home was much enjoyed.  I know that Katy needed this time to recharge before we head to TIRR for rehab and meetings with the prosthetist.  The kids are so happy to have Katy home, and Arielle is a dream baby.  She actually sleeps through the night, and she rolled over on her own, today!  It feels GREAT to be home.

As good as things have been going, there is always paperwork to be done!  I wonder who designs the administrative paperwork for SSI, Medicaid, etc?  The questions asked are often triple negatives.  An example is, and this was an ACTUAL question asked on an application for aid-

“Is it, or is it not, true, that the patient will, or will not, be able to return to their previous line of work, or a new profession?  Yes / No”

I WISH I was making this up!  Even the poor lady who is our representative for this process was confused.  I would think to circle each of the appropriate responses, butI was given VERY SPECIFIC instructions to NOT write ANYTHING on any questions.  It is rediculous.  Now I’m getting letter saying that we are not qualified for said program, followed by welcome letters.  It is truly a maddening process.  We have been so fortunate to have amazing friends and family, and to have been part of a great community, but I wonder what people do if they are new to an area, or if they don’t have a support network?  I won’t bore anyone with my opinions about true healthcare reform, but a common sense approach to anything involving our government is nowhere to be found.  I still haven’t heard from Ted Poe.  I have received a ton of surveys, and bulk e-mails, yet not one response, even from a staffer, about my e-mail.  Hard to be active in the process if there is no communication from the other side.  Unfortunately, this is also not the first time I have written to my elected officials, and NONE of them have EVER replied.  Thoughts? 

I digress.  Katy and I are truly blessed to have the friends and family that we do, and Katy will become independant again.  We have had a few people express concern that she will never walk, or have two functioning arms because “most people don’t.?”  As I told the doctors in the beginning, “You don’t know my wife.”  I can’t wait for all the naysayers to see her succeed.  I want them to see her progress, not to rub it in, but to inspire them to a more optimistic approach to life, and a more aggressive approach to medicine. 

Oh well, now I am just rambling.  I guess I am more tired than I thought.  I will write more soon.

Love to all,

Al

Friday….Our first weekend with all 5 of us home!

You read correctly…Katy, Amber, Jake, Arielle, and I are all home together!  Though there is SOOO much to do, it feels nice to do it with everyone together, and under ONE roof.  It is the first time we have all slept under one roof in over 3 months.  Today was spent on all of the maintenance and administrative, but also saw us entertaining a few visitors.  It was so refreshing to entertain our friends as opposed to medical staff.

Arielle was a vision today.  Her smile lit up the living room as Katy and I worked, and she fell asleep on my belly while nursing.  There is nothing more therapeutic than a sleeping baby on your belly!  We enjoyed a good dinner, and now for movie night!  I hope you all have a GREAT weekend!

Love to all,

Al

A kiss for Arielle

Small Update

We are enjoying another morning with our family, and trying (stress TRYING) to get everything done administratively.  Quite a few people have commented on various thing, and I thought I would touch on them now.  Though it seems weird for me to say that I try to keep some things private while writing a very descriptive blog, many things I leave off on purpose.  Please know that the kids are getting counseling, and that I am in constant contact with various support groups.  For whatever reason, I try not to write about these things.  I just wanted you all to know that we are covering those bases.

It is GREAT to have Katy home, and she is resting so much better in her own bed.  It is AMAZING how much better one can sleep when people aren’t coming in at 2, 3, 4, 5, 5:15, 5:20, 5:30, 5:35, 5:40, 6:00, 6:05………

I will write more tonight.

Love to all,

Al

1st full day home…

Sorry…one more short blog.  We had a GREAT first day home!  It really is so much nicer to be in your own environment.   I wanted to quickly address 2 things that have come in from a lot of readers.

1.  Please feel free to share the blog with anybody.  You do not need my permission.  I find it amazing that people want to read my little ramblings, but anyone who wants to is welcome.

2. The blog will continue.  There may be a few lapses, or short blogs, in the coming days, but I am SURE that we will have a lot to report as Katy enterts the new challenges with prosthetics.

I’m sorry I don;t have the energy to type more, now.  I will write more soon.

Love to all,

Al

GUESS WHAT?!!??

WE ARE HOME!  We arrived at 6pm at the house!  Sorry for keeping it a secret, but you never know when a complication could delay, and we did not want a big scene.  Katy is resting in our bed, and we are SOOO happy to be home.  Sorry for the short blog, but I will write MUCH more when I have the energy. 

Love to all,

Al

Monday…The trip uphill

Many people remind me that the trip is only beginning for Katy and I.  There will be rehab, prosthetics, more rehab, more prosthetics, medicines, and doctors in our future for a while still to come.  As people remind me of these things, I am reminded that, in life, the journey is more important than the destination.  We all end up at the same place, at least on earth, so our travels will define us more than our end.  I am also reminded of something Katy and I heard while taking the Landmark Forum. A great person does not do great things.  A great person overcomes great obstacles to do great things.  That phrase has stayed with me since I first heard it.  I draw on it, often, when faced with unfortunate circumstances.  I hope that this will help some of you too.  Besides, what good is it to argue what has already happened?  We are here, all of us, today, and, though we can’t control what tomorrow may bring, we can own how we approach each day.  Anyway, I’ll step off the soapbox for now.

Katy had a good day.  Her PT and OT are moving right along.  We did a practice run transfering her from a wheelchair to the car.  I had no problem with the transfer, and then Katy and I made a lap up the 6 levels of the garage and back down.  I wanted to see how she would handle the motion of being in a car.  I sped around corners, hit the breaks, swerved back and forth, and Katy was just having a great time.  She said it felt great to be back in one of our cars!  I know that she cannot wait to get back to Houston, and I feel like we are getting close.

Every day, as I write the blog, I try to thank and acknowledge all those who have helped us.  Every night, when I am done with the blog, I think, “CRAP!  I forgot to thank _______.”  If I have forgoten to write my thank you on here, please know that I have not forgotten everything that all of you have done.  I would like to add one more special thanks to all of my students who have raised funds for us, and for Colina’s Restaraunt for hosting an event.  I am so blown away, and proud, of “my kids.”  It reaffirms my faith in America’s youth.  It seems that all you have to do is reach them, and they are capable of anything.  I will write more later.

Love to all,

Al

Sunday..I would,but I have a record player at home….

Don’t spend too much time trying to figure out tonight’s blog title.  It is a joke that a friend of mine shared with me, and, for some reason, it popped into my head as I started to type.  Katy and I were just talking about how nice it will be to see all of our friends, and meet-face to face- all of our new ones!  Don’t forget, July 31st, 2012, Katy and I will renew our vows, and EVERYONE is invited.  I’m thinking we might have to make this a BYOB event.   I have spent a lot of time this weekend reading all of your comments to Katy.  SHe is BLOWN AWAY by the love we are being shown.  We even had a good laugh at the comment from the person who described me as “humble.”  Humble is not a word usually associated with me, but I will wear the title with honor this time.  To me, Katy has done all of the work, and I have just been here to watch her back.  The more I see her positive attitude, the more she becomes my hero.  Anyone who meets Katy always comments on how her smile lights the room.  Even after all that she has been through, Katy’s smile still seems to act as a lighthouse guiding me out of my occasional fog.

Katy and I had a good day.  We did our best to sleep in, but Parkland is the noisiest place on earth!  Also, our room is directly across from 2 helicopter landing pads!  We ate a good breakfast, rolled around the grounds, shared a smoothie…a great Sunday with my girl!  I took a small break from our evening to write a blog for tonight.  Not much happened today, so not much to tell, but I will write more soon.

A quick story that happened while Katy was in the hospital.  While she was in Kingwood Medical Center, my family and I met a really nice lady who’s husband was in the ICU after a stroke.  I would go by his room, and wave a little good JUJU in as I passed his room on the way to Katy’s.  One night, while the hospital is quited down for the day, I am sitting at his door sending a little prayer to him.  All of a sudden I am scared out of my mind by a huge SNNNGGGGHHHH behind me!  I whipped around, completely startled, to come chest to face with a very old, very short, Asian man.  He was in a blue gown, using a walker, and had an indignant face as he grimaced at me.  From inside the waiting area, I heard nurses calling, “Mr. Vu (made up name)!  Where are you, Mr. Vu?”  The old man quickly turned, and, not so quickly, tried to scoot off…away from the nurses.  The nurses ran to get him.  It was a very comical scene!  It was devine how many times, in the midst of some very dark thoughts, that something would happen to make me smile.  It was those little moments that helped me to hang on to my belief that Katy would make it through.  I hope that all of you can find something to smile about, preferably something comically absurd, when life is bearing down on you.

Love to all,

Al

Saturday…overwhelmed with positive

It is the weekend, but there is no rest for us on the 8th floor!  The usual assault of nurses and pca’s began at 5:05am, and we have been off and running since.  The news stories that ran on CNN, AOL, ABC, and the repective websites, have found my inbox flooded with sweet messages from well-wishers ALL OVER the world!  All but 1 comment on the blog has been amazingly sweet, and the offers to share experiences similar to ours has been much appreciated by Katy and I.  One commenter decided to take the opportunity to use the blog as a chance to further push the idea that none of this would have happened if we had been in a hospital.  I posted the comment below:

“I am sorry for your ordeal. However, I believe that a pound of prevention could have prevented 90 percent of your wife’s woes. The reason that health care expenses are out of control is that people wait till the last minute for health care. If your wife had gone to the hospital in a sterile setting, had her baby in a sterile setting, gone home within a few hours, I believe that most of her issues could have been taken care of prior to this issue. I know that most people think hospitals are dirty places waiting for an infection to happen. 99 percent of our nations hospitals prevent the infections that have occurred to your wife. I am an advocate of bonding with your infant and having a peaceful setting for birth. These things could have been worked out for you and her if you had taken the initiative to work things out with a certified midwife, her doctor, the nurses and the hospital.”

I felt the need to reply to this for several reasons.  None of the reasons are because I feel the I HAVE to justify our decisions, but rather to help answer the myriad of questions I receive on an almost daily basis.  If anyone has the time, I suggest they read deep into the comments on the blog.  So MANY people have shared not only sad stories of infections caught in hospitals, mysterious deaths from infection, and horror stories of mis-diagnosis’, but also amazing stories of hope and recovery.  I have been blown away by the recent e-mails sharing support, and offering help.  I hope that future blog readers who share simiar concerns about our decisions will take the time to educate themselves before making definative statements.  I don’t have the desire to sway anyone to home birth, but I do want the facts to be known so that everyone can exercise their own rights to choose whatever method works for them.  Katy and I made the decision to do a home birth after the HORRID (I cannot stress this enough…HORRID) experience that we had delivering Jake in a hospital, and insurance/no insurance had nothing to do with it.  We payed for our delivery in cash, and Katy was given weekly urine tests, swabs, ultrasounds, and we went to a hopital for the official baby ultrasound.  So many people have jumped to the conclusion that 2 people with no money made a hasty, financially based, decision.  That is not the case.  We opted for a home birth, payed our money for it, and took a lot of precautions to avoid infections and other complications.  For these reasons, and because a lot of people want to know, I am going to run everyone through the events that took place up to Katy’s hospitilization.

Katy went into labor around 10:45pm on Tuesday night, February 9th.  I called the midwife, and started logging contractions at around 11pm.  The midwife arrived around 11:45, and we kept track of Katy’s contractions for the next few hours.  The midwife used only a gloved hand for all exams, and used a portable device to monitor the baby’s heartbeat.  As a side note, the midwife used a fresh, sealed, glove each time she examined Katy.  The hospitals all use gloves in a community box, therefore allowing multiple sets of gloves to be touched each time someone puts gloves on.  Katy dialated, water broke, and pushed, and PUSHED, and PUUUSSHHHHED, and at 7:43am, we had a beautiful new baby girl.  The video of the events immediately after the birth are posted on youtube.com, and there you will see a tired, but healthy mother with her new baby.

The next couple of days went as expected.  Katy was very sore, but it was all muscle soreness.  She was slow moving, but ate normally, breastfed, slept well, and had no fevers or abnormal bleeding.  Saturday afternoon, Katy’s pain changed a little.  I called the nurse’s line to Kingwood Medical Center, two different times, and they said that if she didn’t have a fever, or wasn’t bleeding, then it was normal post-pardom pains.  The pain was in her stomach, but she did start to complain about a pain in her right shoulder.  The pain was resolved with massage, and Katy slept most of the night.  Sunday morning I called the nurse’s line again.  They, again, said that all of her symptoms were normal, and that nothing sounded out of the ordinary.  By noon, Katy decided to go to the hospital in spite of the nurses saying it was nothing to worry about.  She was checked in at 12:30pm, and was in an ER room at 1pm.  Most of you know the story from there.

I have asked several doctors, in many different specialties, what we could have done different.  All of the doctors that we spoke to, including those that do not advise home birth, said that they would not have known to do anything different, and that if Katy had been in the hospital, they would have sent her home after the first 24 hours.  It is not standard practice to test for strep A, and, though Katy was tested-and came up negative, there is nothing to indicate exactly where she got the infection.  If the point of infection was our bathtub, the toilet seat, the couch, etc, then no test would have helped anyway.  Also, it is completely possible, and happens very often with strep A, that no visible wound is needed for the infection to get in your body.  As Dr Purdue said in the Houston chronicle story-”You can get it by scratching your head.”

I am going through the trouble of writing all of this down because I don’t want ANY of our energy to be spent on wondering the “what if’s,” and “why’s” of this experience.  We are where we are, and we can only move forward from here.  People die from infections in hospitals every day, yet there is no massive movement to stop going to hospitals.  I wonder if the loved ones of people who get infections in the hospital get e-mails from people telling them that should have done it naturally?  Also, to clear up a few misconceptions, Katy and I are NOT against all modern medicine.  When Amber had an ear ache, we got her antibiotics.  When a fever needs to be broken, we use over the counter medicine.  We just supplement our daily life with more natural remedies to help prevent the need for medicine in general.  I have received not a lot, but several, e-mails that lead me to believe that some people have gotten the impression of Katy and I as hippies that don’t believe in anything that isn’t approved by PETA and the Vegan society!  That is pretty laughable.  All of you that know us should know that that is just not the case.

Now, we are past all of those experiences.  Katy is actively participating in her own care (YEAH!), and continues to defy the odds and beat all of the expected time lines for recovery.  She is a miracle.  I will openly admit that the BEST thing that has EVER happened to me was marrying Katy.  This experience doesn’t change that…it reinforces it.  In our last 11 years together she has taught me SO much.  She is still teaching me to this day.  I can;t wait to see what I learn in the next 11 years!

A lot of people have written wanting to correspond with us.  If you have written me, please understand that WE DO WANT TO TALK TO YOU!  I just don’t have the time to write back now.  I started to, but ever minute I spent writing, 24 other e-mails would arrive!  Please, please, please don;t give up on us writing/talking to you.  It just might take a couple of weeks before I can get to it.  If you don’t hear from me in the next 2 weeks, then PLEASE write again.  I know that Katy and I look forward to sharing your stories, and learning from you.  We both thank all of you for taking the time to share.

Katy and I are going to TRY and take a drive tomorrow.  The docotrs might (MIGHT) let me take her for a little while just to do a dry run of what it will be like for her to be in a car for when we return home.  I think it will be nice to give Katy a drive-by tour of where I have been going while she has been at Parkland, and also to let her see the apartment where I have been staying until recently.  Wish us luck!

Lastly, I want to address something that I hear every day.  Every day I get all kinds of coorespondance telling me how great I am, or what a wonderful husband I have been, etc.  I have done what I felt was my only choice.  There were no other options in my opinion, and I could not see doing anything differently.  If anyone had asked me if I could have done this a month before Katy went to the hospital, I would have said “no way.”  It is amazing what we are capable of when the siuation presents itself.  I know that most people, even if they think that they couldn’t, would have done something similar.  There are stories during wars of mothers performing amazing feats of strength to save their children.  I don’t believe that these women thought to themselves, “I can’t do that, there are bullets flying.”  I think that they saw their child in danger, and they acted.  That is how I feel about this situation.  I saw my wife, my best friend, the mother of my children, and the woman I vowed to love to the end of time in need.  I acted.  It was simple, and it was instinctual.  Please believe that you would, should situation arise, find the strength to act accordingly.  I have to believe that about humanity.  I believe that for all of our flaws, it is our unconscious goodness, sometimes in spite of ourselves, that is our redemption.  I hope, though, that none of you ever have to find out what you are capable of.  I would rather that this remains a hypothetial debate, and that we never test my theory.  If the situation were to arise, thoug, please don’t prove me wrong.

Love to all,

Al

Friday…and I’m still in love

I posted a link to the fund raising web site, and a few news stories, today.  Today was more of the same on the 8th floor.  Katy did not go to PT today due to wounds care, ultrasound, and an exam, but she did do OT and will go to PT tomorrow.  The hospital was slightly more interesting today.  We not only had a terrible storm, mixed with bouts of sunshine, but we also had some sort of “lock down.”  I’m not sure why, but my guess is a prisoner was not accounted for.  Who knows?

Katy has a small mass to the left of her sacral wound, but, after meeting with the doctors, think that it will get better as long as it doesn’t get too aggravated.   She is also getting a 7 day course of a mild antibiotic for a small UTI.  All of these things should, I stress SHOULD, go away soon. 

I was blown away to see that the ABC news story made its way to Houston and then to CNN!  I have been reading the comments all day.  Thank you all, who took the time to write, for all of your kind words.

I did read Katy some of the early blog posts, today.  I am helping her to catch up on what she missed while sedated.  I will admit to crying when I read the early posts.  Even though I know how the story goes, it still made me relive some very tough decisions.  It hurt then, and it hurt to remember, but we now know that the story will have a happy ending! Katy and I are taking the time to laugh and smile every day.  We hope you all do too.  I will write more soon.

Love to all,

Al

A few have asked for more information….

A few folks have asked for more information on the fund raising event on July 10th at the Houston Museum.  Please go to  http://katyhayesbenefit.com/  for more details.  Katy and I hope to see all of you there! 

Love to all,

Al

ABCnews.com story

Some of the facts/quotes got a little jumbled, but we did the interview over the phone at Parkland…the noisiest place on Earth.

http://abcnews.go.com/Health/Parenting/flesh-eating-bacteria-costs-mom-arms-legs/story?id=10646649&page=1

ABC News story

http://www.wfaa.com/

I know its been a few days….

I know it has been a while since the last blog, but there are good reasons.  The first reason is that SO much has been happening!  It seems that there is something always (and I do mean always) happening in Katy’s room.  She has meds delivered 4 times a day, vitals every 2 hours, blood sugar 3 times a day, 3 therapies, the doctors rounding, financial, psych, pastoral, wound care, bedding change, administrative visitors, and the ever-present threat of visits by members of the press……aggghhhh!  Even with signs indicating not to come in the room from 10pm-2am, and not to enter without knocking, members of the staff just barge in at ALL hours.  This constant intrusion has made Katy want to check out of this hotel more than a few times.  She says that she is tired of being poked and prodded.  That being said, she has made some great progress.

Katy’s OT/PT sessions are going very well.  The movement in her shoulders is getting better, as is the strength of her movements.  We started off by moving her from bed to wheelchair by using a hoyer lift (crane lift).  Today we made another advancement in moving her.  One of the reasons that I haven’t written was that I was in Houston for about 36 hours.  I had to keep it a secret so that I could surprise my students at Pin Oak.  It was the last concert of the year for the Stage Band, and it was great to see everyone!  The kids had an amazing concert!  I was so proud of how far these young musicians have come!  While I was down there, I snuck in a little visit with all 3 kids.  While at the house, I also got to eyeball some measurements around the house.  I figured out the best way to get Katy in the house/car, and how to transport her from the car to the chair without a big crane lift.  I discussed this with the PT team, and we did a couple of mock runs.  I was able to lift Katy from bed, and put her in the wheelchair and then the bathing chair.  She did PT/OT, and then I was able to put her back into bed.  Tomorrow we are going to go to the 1st floor and actually put her in our car, and then back into the chair.  Exciting!

Another thing that has changed in the last day…Katy no longer has a trach!  They did a capping trial, which she passed, and then took the trach out this morning.  She is breathing so much better without the trach in her throat!  The really big news came from the results of her EKG.  If you will remember, Katy had an EF of 12 (normal is 55) just a few weeks ago.  Her EF is now 31!  That means that her heart function is improving.  While she will still need to be followed, and medicated, for heart conditions, this means that she is improving and should make a full recovery!  I AM SO PROUD OF HER!!

I want to thank everyone for keeping up with the blog.  The blog will not end any time soon, though there may be a few missing posts due to our schedule.  I will keep this going through Katy’s recovery, and I hope, one day, to turn the blog over to her so that she can directly communicate with all of you who have stayed with us through all of this.  All of you, even those we don’t know personally, mean the world to us. 

As we get closer to Katy coming home, I am reminded of how the work is just beginning.  There is still the fund raiser at the Houston Museum on July 10th to get through.  Our friends have put countless hours into setting up this event, and I know their hard work will pay off.  The funds raised at this event are to help us get Katy the BEST prosthetics we can.  If anyone wants to know more about the event, please post here, or e-mail me directly.  There is also a sea of medical needs to process, and the shifting of mindsets to what will become the new “normal” at the Hayes house.  At any rate, we will have our work cut out for us, but at least WE are doing it together.  I will write more soon.

Love to all,

Al

3 Generations

The day before Mother’s Day: Katy reads her mother Lucille’s MOMality t-shirt (outside, at lunch!) as her daughter, Amber, looks on.

Friday…a stroll in the park

Though all of our days have seemed to blend together for the last 11 1/2 weeks, today actually felt like a Friday.  Probably because we know thekids are coming up, but today was filled with all the usual excitement that accompanies the day before the weekend. 

Katy started her day with a trip to the OT Gym.  The OT Gym is an office, located next door to Katy’s room, with all of the implements needed by the therapists to perform the various exercises.  Katy not only did her usual routine, but a slight amount of resistance was added by using very low resistance bands.  Her left arm is progressing very well, but her right is still having a little trouble.  We found out from a doctor that the x-ray revealed a series of calcifications in her left shoulder.  They will give her some medicine for this, but (I know Katy)I’m sure that she will incorporate a more natural approach upon leaving the hospital.  Though it is weaker than the left, her right arm did improve by 10-15 degrees in lateral motion.  They transported Katy using what is called a cardio chair.  In between therapies, Katy was left in the chair to sit up for a while.

Our next excursion from the room was to the PT Gym (across the hall from the OT Gym).  Today, Katy was able to balance herself in the seated position for 30 seconds (first try), and then 2 minutes (second try)!  She was stretched and pulled all kinds of ways, very painful ways, but kept pushing through her therapies.  We returned to the room for a breathing treatment, and then Katy was off to the hydro tank for wound care and a bath.

While she was down stairs, I went to go get my new phone fixed.  Apparently, there is a huge software malfunction, and I had to spend an hour and a half waiting for it to be reloaded.  I left the store to go to the hospital, and found out that my phone still is having the same issues.  As a result, I have lost all of my contacts.  PLEASE SEND ME YOUR INFO to my e-mail  alhayesmusic@yahoo.com .  Thanks!

After I returned, I was instructed on how to use a hoyer lift.  The hoyer lift is a crane that is used to, very easily, lift Katy to and from her bed and wheel chair.  After that, Katy and I had a date in the park OUTSIDE OF THE HOSPITAL!  We sat in the park and watched the birds.  She said it felt GREAT to have the sun and breeze on her skin.  We got to roll around the hopital for an hour, and we even got to visit some of the staff on the 6th floor.  The hoyer lift was so easy to use, I was able to transfer her back to bed all by myself. 

Please say a prayer for one of the mom’s from the Dallas mom’s group.  I found out today that one of the ladies who had brought me dinner is now in Parkland on the 6th floor.  She got burned recently, and is in 6 East, where Katy was recently.  I hope to get a chance to meet her husband while we are still here.  Anyway, please say a prayer for her.

Only 13 1/2 more hours until the family is here!  Have a great weekend!

Love to all,

Al

Thursday….no pain no gain

Never has the saying, “no pain, no gain,” been more appropriate than today.  Katy’s OT went well, but her PT was hell today.  Though the experience was very painful for her, she did make good progress.  She was able to rest on her sides for several minutes, her hips were flexed the most they have been since she has been in the hospital, and she sat up at a higher angle than she has in the past.  Katy was given a “reducer” for her left arm.  The reducer is similar to an ACE arm sleeve, and helps to prep her arm for prosthesis.  She was also wearing a back stabilizer, similar to a corset, to help activate her stabilizing muscles in her back.  Her very low back hurts when she sits up or is flexed, and we are going to work on strengthening those muscles.  I am so proud of her progress today!

In between the OT, PT, Speech, Respiratory (3 times), wound care, VAC change, and X-rays, we had a meeting with all of the staff directly caring for Katy on the 8th floor.  They told me what they had planned, and I got to ask a lot of questions regarding the details of her recovery, trip home, and needs once she is home.  I also got to discuss the level of communication that is required.  There is always a little informational lag when we change rooms or floors, but I think we addressed those today. 

Once again, I am SOOOO excited to see the kids this weekend.  Every time Katy talks about seeing them, her face lights up!  I know that their visit will be healing for her, and me…I miss them very much.  In between all of Katy’s therapies, I will be handling more administrative duties before the weekend.  Thankfully, the staff on this floor, and the case manager from the 6th, are doing a lot to help me through the process.

In the event that I don’t blog this weekend, I hope you all have a GREAT weekend!

Love to all,

Al

The 1st day of the rest of our lives…..

Today marked the first full day of Katy’s stay in the 8th floor.  Today was a busy day for her.  She had breakfast at 7:30, and went right into OT at 8:00.  They came in for wound care at 9am, and then PT was at 10:00.  She had a small break after that, and then had a breathing treatment.  The rest of the day was filled with treatments and therapies, and a visit from the photographer from the Houston Chronicle.  Katy did great today, and is completely exhausted.  It is so great to be writing my blog from her bedside!

As I looked at her wounds today, I was struck with just how far she has come.  Early estimated from the doctors were that she would have extended periods of open wounds, and skin grafts lasting at least 2 years.  She still has a pretty pressure ulcer on her sacrum, but her legs and amputation wounds are getting better all the time.  The wound care team will look at her stomach tomorrow, and they may decide to take the VAC off.  She is eating all of her food by mouth during the day, and only has the feeding tube in at night.  They are also talking about removing her catheter.  Only a few more tubes to be removed!  She’s not doing bad for a woman that had less than a 5% chance of survival.  Where do they get these numbers?!!?

I know that I have made a lot of general “thank you’s” on the blog, but I wanted to take a minute to thank a few more people.  Sarah, the band director from Pin Oak, has meant a lot to my family for 3 years now.  It is because of her that I am even at Pin Oak.  My time there has helped me to see that I LOVE working with kids, and I am not sure that I would have had that opportunity had she not asked for me to help her with percussion classes. She has taken on a lot of the load in my absence, and I thank her.  Matt, my co-teacher and friend, has also taken on a lot for me.  Not only is he running Stage Band, but he is making sure my Band Camps don’t miss a year. Mike Grove, my business partner and friend, has not only kept the office running, but has been integral in coordinating the technical items for the entertainers at the Night At The Museum event.  Suzy, my dear friend and mother of an awesome young man who I have the pleasure of teaching, has taken on part of the fund raising efforts, and constantly checked in on me to make sure I am taking care of myself.  Derek, guitar player and proud new dad, has been constantly reminding me of our creative goals, and has also checked in on me constantly.  My WONDERFUL, WONDERFUL students have all been so great about keeping in touch with me, and have done some amazing things to help my family.  Though all of these people have so much going on in their own lives, they have all jumped to the task of helping my family, and I will be forever greatful.

Katy is getting to hear all about what people have done, and our doing, and she is blown away.  I can share with you that she is ready to get home, is determined to work hard at her rehab, and is the strongest person I have ever met.  I’m not sure how we will handle seeing everyone when we get back, but I know that we will want to hug all of you as we can!

For now, I am so happy to be typing to you, my friends, my family, as I watch Katy sleeping peacefully.  Good night, sweet dreams, and remember to always believe in the impossible.

Love to all,

Al

Sorry its been a while….

I’m sorry that I haven’t written in a few days.  The internet at the hospital is sketchy (at best), but I have FINALLY found a way to get online.  So, a lot has happened in the last few days.  The biggest news is that Katy is out of the ICU, and out of the ACU.  Katy is now on the rehab floor at Parkland.  This is the last step before she gets to come home!!  We moved up here today, and she will begin her 3 hours of daily therapy tomorrow.  I have slept in her room the last two nights, and will be here again tonight.  It is SO nice to be able to share the same room as my wife again…even if the accomodations make me feel like I just wrestled for a week straight!  Katy is enjoying having me around, and I am actively helping with her PT/OT.

This coming weekend will have Amber and Jake coming to visit Katy for mother’s day.  She is SOOOO happy to get to see them, and can’t wait to be home!  She even got to talk to Arielle today on the phone.  I know that she is ready to work very hard at her therapies so that she can get home soon.

I wanted to say a big THANK YOU to everyone involved in last weekend’s QLS event.  The event sounds like it was so amazing, and we are both blown away by everyone’s caring and generosity.  I think it should be known that what means so much to us is not the amount of money and items that have been given for us, but why these things are being done.  It reaffirms our faith in humanity that people will give so much to us in our time of need.  The fact that a community is coming together makes our hearts swell.  Though we will never be able to repay all of you for what you have done for us, know that we will gladly do anything we can should any of you fall into a time of need  Thank you all.

For now, I have a ton of administrative work to do, but I will write more updates and let everyone know how Katy is doing.  I hope you all have a great week!

Love to all,

Al

Big Thanks

There are many people who need to be thanked for so many things they do for us. The list is a long one, but we wanted to mention a few today who have given selflessly of themselves and of their businesses to help the whole family and the house.

Please, send them a warm thanks and show them your appreciation for their sincere generosity:

Larry Levens, owner of Sundown Lawn Service in Kingwood, has sent his crew every week to our house to keep it in tip-top shape. Thank you, Larry! 281-827-7022  and 281-358-3216

♥

Kent and Jan Stevens, the wonderful owners of Pet Ranch at Kings Crossing in Kingwood have really helped us take care of our three loving dogs and cat. 281-361-4300

♥

Mary Kay of Shears N Action has cut the family’s hair for free since Katy went to the hospital. She’s an angel! 3065 Woodland Hills Drive, Humble. 281-358-0656

♥

Rodney at Millenium Motors on Northpark in Kingwood, for your generosity! 281-359-6877

♥

Sandy at Scapes Environmental Designs in Kingwood, for filling the flowerbeds with color! 281-359-7127

There are many many more of you out there who have helped in so many wonderful ways. Words aren’t always strong enough to express our gratitude. But we’ll try.

More thank yous to come.

Surrogate Update

Al is staying in Katy’s room tonight and wishes everyone well. He wrote a long “Weekend Update” post today from the hospital room with BIG THANKS to Kyle and Monica at the Children’s Assistance Foundation, MOYC and many others, plus 8 paragraphs of updates and more, but when he hit the “SEND” button, it was lost in the ether.

Gotta blame that bad connection from inside the hospital, or else all the interference from the machinery.  But he assures us it was plenty of good news and humor! For now, here’s a photo of the fabulous QLS-Children’s Assistance Foundation fundraiser dinner, auction and fashion show that was put on last night for Katy and her family at the QLS Family Fitness Center. It was amazing! So much love, it was overwhelming. The whole Hayes family says, “Thanks for the outpouring of love!” More photos will come of this amazing event.

Katy and Al called Betta just as the event’s bingo game was starting and Betta said, “I’m sitting here with 250 of your closest friends.” Katy responded, “I didn’t know I had that many friends.”  Then she said, “I’m blown away.”

Al will be back soon with that update, as soon as his laptop has a decent signal.

Thom

Guess what…..

Katy is out of the ICU!  Katy was moved to the accute care unit (BACU) today around 4pm.  I was able to spend a solid 3 hours with her tonight, and will spend all day with her tomorrow.  She is in a private room, and starting Sunday, I will will spend some night swith her in the hospital.  She is still getting settled in, and I am learning all of the new routines.  She was able to talk with Amber, Jake, and the whole family on the phone tonight.  She was SOOO happy to hear the kids’ voices again! 

I had a meeting with the admissions person for the 8th floor today.  I am really happy to report that Katy should be going to the 8th floor in the middle of the week.  The reason for the delay was to allow Katy a step up to the intensity of the rehab floor, and to allow them to monitor how she does without being hooked up to constant monitoring. She did great today, and she is anxious to get to the 8th floor and then home.

I will write more later.  I hope you all have a great weekend.

Love to all,

Al

A special gift

Please see the April 25th post, “A Message from Katy“ for more photos of the special, magical visit she had with Jake and Arielle.

Beautiful.

Thursday….visits and progress

What a day!  The exclamation on that sentence was for the good and the frustrating.  Luckily, the frustrating was administrative and not medical.  I hope that we are on way to resolving all the administrative issues, and keep heading towards the future.  To their credit, the case manager, financial, etc were all busting their backs to get everything done.  They really are trying hard to get things moving, and I REALLY appreciate it.

Katy enjoyed a good visit with my mom and step dad, ate a good breakfast, and her coughing has been getting stronger and stronger.  The coughing is good, as I have said before, and she is getting so much better at coughing up the secretions that are in her lung.  She is getting clearer every day.  The reporter from the Houston Chronicle came in around 10am, and had a little time to talk before she went in to see Katy.  Katy was very alert, talkative, and looked absolutely beautiful for her interview!  My mom, step dad, a family friend, the reporter, and I had a nice lunch, and then I returned to the hospital for Katy’s rehab.  Her rehab was after lunch today, and she did well, as usual.  She was in her chair for another couple of hours today.  The chair is good for her, but does cause her some pain because of the pressure ulcer on her sacrum.  We usually position pillows to try and raise her off of the painful area.  I am so proud of how well she is doing in PT/OT!

I met with cardiology, renal, burn, psych, case management, financial, rehab, PT/OT, and the dietician today.  Whew!  A lot of people are looking after Katy.  Katy has not been allowed to have water due to her sodium being slightly low, but they added a little sodium to her feeding tube to see if they could boost to normal levels.  If she maintains her level, then they will remove all dietary restrictions.  She really enjoys eating fruit and salad, and eats a little of everything else, but mostly eats the fruit and vegetables.  She is very anxious to get to the 8th floor.  She wants to get through rehab and get back home….NOW!  I love her tenacity.

I’m sorry I haven’t been writing as much lately, but I will try to get my word count up.  I had a spell between the frustration last week, and the progress this week, where I was just TIRED.  I am feeling a little better now, as I know that it is important for Katy for me to be able to keep my pace with all of the things happening.  Aside from the blog, playing my guitar every night keeps me sane. 

Early on in our dating, Katy and I spent a lot of time going to parks, preserves, hiking trails, etc, and really got to know each other on our long walks ans talks.  Sometimes we would take out her boat that she used to own.  This Donzi was a little 16′ jet boat, but was badly designed.  The starter always jammed, it sucked things into its intake….something was always wrong with this boat, but we still had fun with it.  Whatever the problem was on any particular trip, it usually ended with me in the water fixing it.  One time, after the starter jammed, I had to swim across the river in Jonestown holding the tow rope, TRYING to pull the boat back to the dock.  I’m sure it was a hilarious sight to see me towing a boat by swimming!  Another time, we had gone out for a Winter’s morning boat ride.  I had done a lot of work to the boat, and the boat had been running great for a while.  We were cruising down the Colorado river, in 38 degree weather, when we sucked up some seaweed-tyoe river growth.  It turns out that the unusually warm weather caused the plant life in the river to over-grow.  We couldn’t see it until we were a mile deep into it, and we were now drifting.  The fix, I had to dive into thhe COLD water (this part of the river came from the lowest part of Mansfield Damn) and unclog the intake.  I WAS FREEZING as the wind hit me on the ride back.  As much as our adventures were often a commedy of errors, they are still fond memories for us.  We have always held to the belief that if you can’t laugh at yourself, then you can’t laugh at anything.  We always tried to keep a good sense of humor, and Katy is still keeping her wonderful sense of humor through this experience, too.  I will write more soon.

Love to all,

Al

As usual….

….a minor setback. This time, thankfully, it is an administrative setback, and not a medical setback.  Due to a few different things, Katy did not move out of the ICU, but should move real soon.  She had a good day, and worked really hard at PT/OT.  She ate a bit more today, and is still really enjoying her Ensure/milk combo.  She really enjoyed visiting with my mom and step-dad, and says she can’t wait to be home! 

She was able to control her bed for a little while, today, with the cuff they made for her.  The plan is to modify it a little bit, to make it easier to use, and have her keep using it as part of her therapy.  She sat in the chair for another 2 hours today, and they will continue to have her sit up every day.  Her sitting up helps her break up the congestion in her lungs. 

More soon, especially after we get through the red tape preventing her from going to the 8th floor.  Maybe tomorrow?  Wish us luck.

Love to all,

Al

What a Difference 3 Days Make!

It’s amazing that 3 days ago we were in the fight to get the kids to see Katy in te ICU.  The talking trach was just put it, and the doctors were still very cautious about her heart and overall condition.  Fast forward 3 days.  Katy is eating, and not on the ventilator, and is doing PT every day.  Time warp to tomorrow and…..Katy will be leaving the ICU and going to the 8th floor for in-patient rehab!!  YEAH!!!!!!! Can you tell I’m excited?  She will be doing PT for 3 hours a day, and I will get to be present for a lot of the therapy. 

Tomorrow will be a busy day.  Katy will be moved to the 8th floor, my mom and Ike will be coming in during the day, we have a few visitors from the Dallas area coming by, and we will be trying to figure out all of the new rules and procedures for the 8th floor and Katy’s new schedule.  Thursday will have us visited by a reporter from the Houston Chronicle, and the weekend will see Chris, and the kids coming to visit.  Such good news this week!

I will write more soon.

Love to all,

Al

Keep your fingers crossed…

It is amazing to me that last Monday I titled the blog “Sounds like someone has a case of the Mondays,”  and now I am asking you to keep your fingers crossed.  It is like some shot off the starting gun 5 days ago, and Katy just started running!  Today was no different.  Though I am always trying to hold back 20% of my excitement, I will conservatively say that I am happy with today’s progress.

Katy was wide awake and in a good mood this morning.  She was enjoying her Ensure, though upset that she hasn’t had a chocolate one since Saturday.  She asked for, and got to eat, some fruit.  She was overjoyed to taste fruit!  The PT/OT team wirked her out for an hour today, and gave me a list of exercises that I can do with her while I am visiting.  They started off working her lower body while she was laying in the bed, and even got her to try and roll over on each of her sides. Then they moved her to the wheelchair and worked with her arms and shoulders.  She was in the chair for an hour yesterday, and was in it for 2 hours today.  Tomorrow they are going to create a soft cast with a dowel attached to it for Katy’s right arm.  She will use this to control her bed.  So much progress in 5 days!

I have spent quite a few hours trying to figure out the who, what, when, where, and why regarding Katy’s move back to Houston.  After much discussion, and talking with a few different people, it makes sense that Katy stays at Parkland for her in-patient rehab.  She is already on the waiting list for moving to the 8th floor, and probably will move in the next week.  The good news is that, unless anything unexpected happens, and as long as she progresses as we expect she will, there is no reason that she will not be back at OUR HOUSE by June 1st!  Once she is home, then she will start going to in-patient rehab in Houston.  There is still a lot to do.  The staff will be looking for funding for a wheelchair, and prosthetics, and we will need to step up the search for a van, but these are all very do-able.  Like I said…keep your fingers crossed.

To all of my music students, be on the look our for an e-mail from Matt Foster and Mike Grove.  They will be sending info on the Summer Band Camps.  If you are interested, and do not see an e-mail in the next 2 days, please e-mail me your contact info.  Camps will go on as usual, and I will be there for a day or two each week to see all of my kids!  I am also planning on playing the gigs with my wonderful band of friends.  A VERY special thanks to the Weasters.  Their support of 4/4 Music over the years has been the reason that our Summer programs have been such asuccess.  Though I cannot be there in my full capacity this year, I do plan on being there 100% next year.  Until that time, rock on!  I can’t wait to jam with all of you again.

I promise to write more stories about Katy soon, but I am doing a bunch of admin stuff tonight, and time is of the essence.  I hope you all have a great week.  Remember that every day is a miracle.

Love to all,

Al

A Message From Katy

To say that this weekend was eventful would be an understatement.  Saturday started off with the removal of the 8 guage trach and the insertion of the smaller 6 guage talking trach.  The doctor said that it might be a few days before Katy would be able to talk, but she started talking right away!  Her first word was “coffee.”  It was so great for her to be able to talk to Lucille, Thom, and Betta, and it made life so much easier for Katy to be able to tell the nurses exactly what she wanted and if she was uncomfortable. 

The visit with the kids was amazing!  Katy got to have Arielle lay with her, and I sat the baby up for Katy to see and talk to her.  As any parent knows, it has been dreadful for Katy to not be able to see her kids, and this visit lifted her spirits.  Jake had a great visit with his mom.  He sang a couple of songs he has learned in school, gave her a picture he drew, and was able to hug and kiss Katy.  He handled the whole experience very well.  I am so proud of him!  He even asked to see her arm, and seems to have taken it all well.  He will visit with his couselor on Monday, and I know that she will be able to help him further process what his mother is going through.  He told me, “No matter what, she’s still my Mom, Dad, and I love her.”

Lucille, Betta, and Thom all got to see Katy, and Katy loved seeing all of them.  Katy told her mom to tell everyone back in Michigan that she beat this infection.  She has been eating a little, mainly for comfort, but REALLY enjoys the Ensure shakes they bring her!  I don’t think I have ever seen her so elated to eat anything before. 

We got an added surprise this morning.  When we went in for the 11am visit, Katy was in a wheel chair!  She was able to be rolled around the ICU a bit, and gival a grand tour of the ICU floor.  Lucille, Betta, and Thom were all able to see her sitting in the chair, and Katy was so happy to be out of her room for a little while.  They even gave her another breathing trial, to stretch her lungs a bit, and she passed with flying colors.  She watched a movie, today, and has been given a call button so that she can call the nurses whenever she wants.  This is the first step in her being able to start doing things for herself, and many more steps are coming quickly.

I got to spend a little extra time with Katy telling her about all that has been happening while she has been in the hospital.  I got her caught up on her wounds, and all the medical info that she wanted, and I was able to start telling her about all that people have been doing to help our family.  She was blown away by all the love that we have shown, and wanted me to tell all of you something.  Katy said, “Thank you all so much!  What you have done for my family is AWESOME, and I can’t wait to see everyone to tell you all thanks in person.”  She just couldn;t believe that so many people have been so selfless in their giving. 

I wanted to add a little something to the Channel 11 news story.  What really bothered me was that so little attention was put on the amazing event that was put on for us by people we don;t even know.  The event raised several thousand dollars, and was a perfect examples of neighbors helping neighbors.  Unfortunately, the news spent so little time “reporting” on what the world needs more of….people doing for other people.  To all of you who were involved in the event, THANK YOU!

I hope that everyone had a great weekend, and will have a great week.  I will spend my week trying to confirm plans to get Katy back to Houston.  I hope we are able to get approval from a hospital soon.  Katy is cleared to travel, and she desperately wants to be close to her family and friends.  Wish us luck!

Love to all,

Al

A blog has never tasted so sweet!

Today was a great day for Katy!  The day started with a good visit at 8am.  She was alert, and we talked about how excited she was about seeing the kids.  I massaged her until she slept, and then let her rest up for the big day ahead.  PT came by at 11am and started her first session.  They moved her arms and legs, then had her try.  Katy said that she enjoyed the stretching, and did a good job for her first day.  Her left side is a little stronger than her right.  This is probably because of the chest tubes that she had on her right side.  The bandaging restricted her movement for a few weeks, and she probably compensated with her left side.  The PT/OT team sat her up, and had her hold up her head.  She got a little dizzy sitting up for the first time, but got her equilibrium after a minute and was able to hold her head up and move it around.  They will continue to do this routine every day, and increase the regimen as she can progress.  One of the team told me that they might pur an attachment on her arm, with a dowel attached, so that she can operate her bed controls.

Speech therapy came by at 2pm, and we did Katy’s swllow trial.  She passed the test, and was cleared for most foods!  At 5pm, Katy ate her first meal in 9 1/2 weeks!  She was euphoric as she tasted the meat, rice, carrots, salad, and milk, and then, for dessert, had a chocolate Ensure shake over ice.  She said that it all tasted amazing!  It was so nice to see her enjoying a meal, and I can start bringing her food…including smoothies!  She will also get to select from a menu every day.  The cafeteria food at Parkland is actually better than most hospital food.  This is a huge step towards Katy’s moving to Houston, and to her overall recovery.

I am only writing a short blog tonight.  I have written a lot the last few days, and I hope to have more good news to report on Sunday.  Until then, I plan on soaking up as much “Baby love” as I can while the kids are in town. 

Love to all,

Al

Thursday Addendum

Channel 11 did a news story on Katy today.  I watched the piece and was appalled at the angle they chose to take, and that they did very little to highlight the hard work of the caring people who put on the fundraiser.  Michele (who watches Arielle) was interviewed by the camerman, the reporter didn’t even bother.  The information was misleading, and full of half truths.  I called the network and expressed my displeasure.  The person I spoke with said that they had no agenda, but wanted to highlight our tragedy.  I asked why nothing was done to highlight future events, the websites, the blog, etc, and he said that he was unaware of any of that.  Unfortunately, this is a case of when the media does the wrong thing for the wrong resons.  The person at channel 11 said that they would pass my info and unhappiness to the reporter.  I hope to get the opportunity to correct what is incorrect in the story.  I am putting the link to the station below.  Please feel free to watch the story, and, if you feel that the story is incorrect, let them know.

Link to the story.

I am also including an e-mail I wrote to Ted Poe, our congressman.  Maybe, just maybe, Katy’s story will help to inspire at least one of our leaders.

Mr. Poe,
   My name is Al Hayes, and I live in your district in Kingwood, TX.  My wife and I, two self-amployed small business owners, and our 3 children have recently been struck by tragedy.  Four days after the birth of our third child, my wife went to the hospital with pains in her abdomen.  This pain turned out to be a Strep A infection, and, as a result of this, she was diagnosed with not onyl strep A, but necrotizing fascitis, DIC, toxic shock syndrome, and has had multiple surgeries.  She was moved to a hospital in Dallas for wound care, and I have been by her side for 10 weeks.  As a result of this illness, my wife has had her colon, lower bowel, part of her stomach, her uterus, overaries, and her felopian tubes removed, as well as having both arms and legs amputated.  Though this has been a trying time for my family, we will perservere.

   I write to you for several reasons.  My wife and I have enjoyed listening to your common sense approach to taxes, health care, and Chinese made light bulbs.  The thought occured to me to write to you, our congressman, regarding health care, and health care reform.  In all of the debate over health care, from both sides of the aisle, none of what is being said makes any difference to a middle class family.  It is very frustrating for me to see how little all of the money spent will do to help my family receive quality of care, or affordable health care.  Even worse is that the other side of the aisle seems to be unable to offer any reasonable options to the Democratic plan.

      I offer, to anyone who is willing to listen, to allow a very personal, and unfiltered, look into exactly what is like to be a family trying to run business, raise kids, and live in suburban America.  Not only is health care out of control, but common sense seems to be greatly lacking in our leadership.  The suggestions coming out of Washington do nothing but compound the problems faced by us, even before this tragedy, and offer no solutions now that we need help the most.

   I ask, why is there no tax break for medical coverage for the self employed?  Why is there no oversight for what a hospital can charge for medicine and surgery?  I was billed $800 for a teenage girl to put two computer speakers up to my son’s ears and play a tone from the Microsoft library.  While I am not a fan of the government telling anyone what to do or charge for services, that is blatant abuse of the insurance system.  What about the $5 for tylenol I was charged for post op when I did not receive any?  My insurance paid for it, and I had no say so.  These are but small examples of what a real American in the middle class faces daily.

    Now that my wife is in this state of critical medical need, some of the bigger problems, that I did not know existed, are now revealing themselves.  The interviewer for the Social Security Administration asked me why I felt that quadruple amputations would exclude my wife from returning to her work as a massage therapist and nail technician?  I am told by SSDI that if our small businesses lost even $1 in the last 10 years, then we are not eligible for SSDI.  I asked what the unemployed did, and he replied that that was not his job.  These, again, are but small examples of a failing system. 

   We were in the process of getting approved for medicaid when the decision came to move my wife to a better hospital.  Due to an overlap of a few days, we were transfered to Dallas.  Though the team at Parkland Hospital has done a wonderful job medically, no though or concern was given to the overall well being of my family.  In our case, we were lucky enough to have a wonderful support network of family and friends.  This network has allowed me to be by my wife’s side for 8 1/2 weeks in Dallas.  What of those poor souls who don;t have the network that we do?  Do they have to watch their loved ones go away for care because of a lapse in paperwork?  Aren’t these items on the agenda for defining what is health care?  If they are not, then I suggest, no dare, congress to come and spend a week in the ICU waiting room with me.  Legislation would surely change if any member of congrss, without benefit of of privelage or celebrity, were to see what a real American working class person goes through in the current medical system.

  Mr. Poe, I appeal to you.  Your stands for common sense in the past have left me with hope that there may still be a few people in Washington that have not lost their minds, morals, or patriotism.  Perhaps there are a few who are still steadfast, and will not sell out our American values for whatever perks and priveleges their office may provide.  I appeal to you to be that person.  Read my wife’s story, read my blog, feel the frustration of being an American trapped in the system, and take our story with you to Washington.  Use our pain as inspiration to fight, and make change in, this system.  I am including my contact information below.  I beg of you to use it.  No amount of written word can express to you the frustration that I , and many Americans, are feeling, and this feeling has been amplified by a tragedy that, unfairly, struck a loving mother and wife trying to make it in our great country.  The battle to defend the American dream is upon us, and how you, and men in high office, raise to the challenge, or fall willingly, will determine what lies ahead for all future generations. Thank you, in advance, for your time. 

God Bless America,
Al Hayes

Thursday…more good news

Forst thing’s first……HAPPY BIRTHDAY, AMBER!!! Our beautiful daughter turns 16, today.  I’m so glad she has had a good day, and I know she is excited about getting her car while visiting her Dad this weekend.

Today was a great day for Katy.  During our first visit, Katy was wide awake and in great spirits.  Later in the morning, Katy was visited by the PT/OT team.  They consulted with cardiology, who gave them permission to do whatever level of PT they want.  This is good for two reasons.  One, she will start PT, and two, that her heart is able to handle this!  They will start PT tomorrow at 11am.  Later today, Katy was visited by the speech therapist.  She was given a preliminary swallow test, and passed it.  Tomorrow I will assist in the actual swallow test, and if she does well, will be cleared to start eating some foods!  The wound care tech came by, too.  I was there to see under her VAC again, and the progress her body is making is astounding.  Two weeks ago I wrote about seeing her intestine.  Last week her intestine was covered with a layer of fascia.  This week her wounds is much smaller, and Katy has grown a layer of muscle over her fascia!  The doctor thinks that she might not need a skin graft on that wound! Also, Katy has been doing very well on her times off the ventilator.  Every day they take her off for several hours to strengthen her breathing.  She went longer today than yesterday, and longer yesterday than the day before.  Soon they will get her to where she no longer needs the vent.  All in all, today was a great day.

I have received several messages telling me to put things in Katy’s room etc.  Katy has had pictures of the family, pictures of the ourdoors, music, radio, TV, scented oils, cards, letters, lotions, and all sorts of things in her room.  Flowers are not allowed in the burn ICU as bacteria on the plants can be fatal to burn patients.  I promise you that Katy is getting all sorts of reminders of the outside world.  I felt I had to write this because I have received countless emails offering suggestion about what to put in her room.  Also, I have brough gifts for the nurses, I just don’t blog about who and what I have given.  For matters of privacy, I have to leave certain info off of the blog, but know that I let the good nurses know that I appreciate them.

As I was writing the blog tonight, I received a call from Sarah Barnes, the Pin Oak Middle School band director.  The band was having a concert, and she called me during the concert so that the students could say “hello.”  Then I listened to them play a piece of music.  They did a GREAT job!  I am so proud of all of the band students, and of all the fine arts students, at Pin Oak.  I miss them, and I cannot wait to see them again.  They have given me so much, and I love each and every one of the kids that I have had the honor of teaching.  Great job, BAND!!

I am SO looking forward to seeing the kids this weekend, as I know Katy is.  I will write more later, but now I am off to get the place ready for guests. 

Love to all,

Al

Paula’s PSA

A special thanks to Paula and Chesmar for the PSA on KODA Sunny 99.1 FM.

On the radio:

Two Blogs in One…Read on and I’ll explain…

I wrote a blog, last night, that was very emotionally charged.  I feel very strongly about every word I said in the blog, and I stand by my position, but was worried this morning that it might be counter-productive if it brused the egos of those whom I need to cooperate with what Katy needs.  I have decided to repost the blog further down on today’s post.  How the people within the Parkland community handle what I say will be truly indicative of their character.  I have read that the truth can withstand scrutiny, and, in fact, invites it.  The only way to know that it is the truth is to allow others to question it.  That is how I feel about this situation.  Anyone treating Katy who does not like my scrutiny, is probably not overly secure in their abilities, or may, in fact, be aware that they are putting their egos in front of the good of the patient.  I am sure that, in many cases, medicine is a thankless field, but that begs the question, are “thanks” why you decided to be in medicine?  When I was a manufacturer’s rep, my sales manager told me that no one will ever tell you how great you are, and if they do beware.  You will know if you are doing a good job by the amount of money you make.  I would offer that the doctors will know how good they are doing by the number of people who leave the hospital with a quality of life BETTER than the “standard of care” usually allows for.  Once again, I am offering the challenge for the good doctors to become great ones.

Today was a good day.  I was informed that the kids would be allowed to see Katy this weekend!  Jake will continue his counseling to help him process this, and he will return to counseling immediately after returning to Kingwood.  I know that Katy will benefit greatly from seeing Jake and Arielle, and that this weekend will light the fire under her to get out of the hospital.  It is Katy’s (and my) belief that medicine can only do what your body and mind allow it to.  Once we get Katy fully aware, and active, in her treatment, then there will be no stopping her.  She was very lucid, today, and expressed very well her desires, pains, etc.  Dr. Das also said that they would be switching her from 4 small doses of the beta blockers, to the once daily larger dose.  Her heart appears to be strong enough for this, and that is how the medicine was intended to work.  Her temp did creep up a little around noon, but reduced immediately after her bath.  It was creeping up again this afternoon, but I think she is too warm due to being over-dressed.  To clarify, a few of the nurses tuck her arms into the gown, tuck the gown under sides and legs, tuck pillows and towels under sides, cover her to her throat, etc.  Every time I come in, Katy is asking me to get that stuff looser.  When the nurses do all that, Katy can’t move her arms.  She gets pinned down, and gets very warm under the gown that is not made of very breathable material.  In the absence of her ability to move her own covers, the nurses will just have to be more diligent in checking to see if she is hot or cold.  Overall, though, Katy is doing very well, and really wants to come home.

I am going to post last night’s blog below, please remember that some of what is written expresses frustration from 24 hours ago.  That being said, it does not make the anything written less valid.  The overall concerns I address are still very real.  My distrust of the system is real, and the system has done very little to prove my distrust misguided.  Rather, I feel, that only through a series of logical challenges has pregress been made.  There are those golden few who, unfortunately, have to overcome the burdens of every bad experience that Katy and I have had prior to this experience, but those people have risen up, nobly, and will always have my gratitude and admiration.  The others will only temper my resolve to campaign for real change in a system that is very definately broken. 

One last point.  I have received various people communicating that they don’t comment because they don’t want to bother or overwhelm me.  Please comment all that you would like.  No comment, unless inapropriate, will be considered a bother or waste of time.  This blog is all of our way to communicate with one another.  I have left up posts from people that didn’t agree with me, and will continue to do so, so long as they are not causing harm or telling falsehoods.  This is a wonderful think tank, and the ideas posted here, often, offer questions for me to ask during my days at the hospital.  Thank you for taking the time to care enough to post.

Last night’s blog……………………….

I will start out by saying that today was a wonderul day for Katy!  While getting the trach put in this morning doesn’t seem like a lot of fun, she was able to be so much more expressive this afternoon, and said that she was “ready to go home.”  I should say that she “mouthed” that.  She doesn’t have a talking trach in yet, but they will be reducing that guage of the tubing until she gets into a talking trach, and this will help her ween off of the ventilator.  I visited with her at 8am, and then they came in to do the procedure.  That was foillowed by daily routines such as bathing and dressing changes.  So I saw her again at 2pm.  She was semi awake, but smiled a bit, and loved the massage I gave her.  5pm came and she was WIDE awake.  She told me exactly where she felt pain, how she misses the kids, how she wants to say “I love you,” and “thanks” to all of her friends for doing so much for us.  She wants a smoothie!  It was great to see her so much more animated and expressive.

While I was in the room, a doctor came by to visit and let me know about the procedure going well.  She explained how they would reduce the size of the trach, how the talking trach would be put in, and how it would heal when it was taken out.  Then she said, that after talking with Dr. Martin (psych), that Katy was a little depressed by not being able to see her kids, and would it be alright to give her some SSRI drugs (anti-depressants)?  I said that instead of giving her drugs, they should let her see her kids.  I said I didn’t think Katy would want this, but asked her.  The doctor asked Katy, too, and Katy said “no” to the drugs.  I would like to back things up a bit.  Amber and Jake are seeing a couselor to help them with this.  As per my conversation with child-life, Jake is going twice this week, and again on Monday after his visit to Dallas.  All of this was arranged so that Jake could see Katy this weekend.  Unfortunately, Katy’s illness and Jake’s school schedule conflict with what days child-life works.  I have asked for an alternative since we cannot get the kids there during the week.  I have asked for another child -life specialist.  I have offered to pay for the overtime.  I have offered to bring in my own, private, child psychiatrist.  As of now, they seem unable to commit to anything other than “we understand,” and “we don’t really have any options to offer you.”  Sorry for I am about to say, but that is BULL$H!T.  They know it, and I know it.  I feel more than confident that I can find an equally experienced and qualified, if not more, on my own.  If Jake’s well-being is truly their concern, then me offereing to pay money for a highly qualified professional should ease any concerns.  Unfortunately, this appears to be a case of “scratch my back, and I’ll scratch yours.”  The BICU doesn’t allow children under 12 in unless this PARTICULAR child-life specialist goes with them, and she doesn;t want to work on weekends.  I have asked for others to investigate if another child-life specialist on campus could act as a surrogate for this weekend, but, honestly, I don’t really feel like much effort is being made.  In fact, very often, I don;t get the feeling that any of these obstacles are truly about what’s in the best interest for Katy.  It feels, at least to me, like a reactionary defense against a bruised ego because I chose to question the child-life specialist’s commitment to solving that actual problem.  When confronted with my frustration, her response was  to imply that if I wanted her help, then I would have to be nice.  Nice is fine, as long as progress is being made, but in these situations, that are, at best, inconvenient for all involved, we cannot limit the well being of a critically ill patient by the chosen work schedule of a “counselor” with banker’s hours.  If the well being of children was truly the concern of the policy makers, then the weekend would be the busiest time for the child-life specialist.  That is when most families are able to visit with the kids in tow.  I doubt that I will be able to change the policy, but I will push as hard as possible for Katy and Jake to see each other.  As I wrote in the title, they just don’t get it.  Offer us drugs instead of seeing the kids.  Tell us what we need to do to prep Jake, but can’t be there on weekends.  Don’t they teach a class in common sense?  It is intersting to me how sensitive and thin skinned people who work in a burn ICU can be.  A doctor once told me that the hardest thing for him to get used to in the BICU was “more.”  Everything was “more.”  More blood, higher temps, more medicines, more doses, more frequently, everything was “more.”  That being said, you would think that the people working on the floor would be used to a little “more” emotion.   Wish me luck.

The cardiologist called me today.  Katy’s number are where they would like to see them, considering her condition.  She seems to be responding to her meds well, her temp is not rising, heart rate is good, blood pressure is in the zone, her urine output is good, and (very important)  she is mentally alert.  There is not much news on the cardiology front.  Time will be the key to seeing how she responds to everything.  I would like to say how much I appreciate Dr. Das doing what he said he would.  A simple 1 minute phone call eased my mind.  In that small amount of time he was able to tell me what I needed to know to feel better about Katy for the next 24 hours.  Though it was a relatively small action, the resulting level of confidence in the treatment Katy is receiving is increased due to me being directly in the path of information.  Dr. Martin asked me what I was worried about, and why I wanted to know so much?  I asked her if she would invest her money in a bank or business with a 97% failure rate?  She said she wasn’t prepared for me to ask that question.  I said to her that if she wouldn’t put her faith in a bank with a 97% failure rate, then why should I put my faith in a medical system that, statistically, has a 97% mortality rate with strep A infections caught after 48 hours of infection (Katy was 96 hours in when she was admitted to the hospital)?  I think that we too often take a passive seat to medicine and doctors.  It would be different of it were a broken arm.  An X-ray would show all of what is wrongs, and they can fix it.  But what about when they “don’t know?”  For weeks there has been speculation about the cause of the fevers, but the cultures were negative.  It turns out to be an infection (we think…still not 100%) in her lungs that DID NOT show on the cultures, but were revealed during an x-ray or scan.  So why were they so willing to not do the very simple, and non invasive, test for a virus simply because she was not “indicating?”  It seems to me that if the medical community does not start learning from its own history, then it…rather it’s patients, will be doomed to suffer the consequences of of repeating the past’s mistakes.  I feel that change isn’t coming quicker because it is not the doctors who feel the consequences of their inability to adapt more quickly, it is the patients, and the patients’ families, who suffer while they quote “standards of care” in cases where they have a close to 100% mortality rate.  Kind of like doing the same thing over, and over again and expecting the same results.

Though I could go on with what I feel is wrong with the doctors, and the medical community, I would rather end on a positive.  The majority of the nurses have been great, and a few of the doctors have been more willing to be flexible in their understanding that this, unfortunately, can’t be rectified with “we’re doing everything we can,” and “we’re giving her medicine for that.”  I also have been overwhelmed, in the good way, by the love, support, and prayers of all of my students.  My music students are the greatest!  I get texts, e-mails, facebook messages, and posts from most of my kids, and it means the world to me.  I am so honored to have been allowed to be part of their education, and I can’t wait until the situation stabilizes enough so that I can be back there standing on top of the amps, yelling at the kids again.  To them I say, I can;t wait to jam with you all.  I love you.

Love to all,

Al

Sounds like somebody has a case of the Mondays….

Seriously, today was a good day.  Katy’s vitals stayed in the range we would like them too.  Her temp did creep up a little at the end of the day, but a little fluctuation is to be expected.  She was awake most of the day, and is getting much clearer at mouthing words and expressing her wants, discomforts, etc. 

I actually got to meet with psych today, and, after a nice meeting, the psych doctor met with Katy.  Dr. Martin and I discussed my desires for communication, where I felt Katy was at mentally, and many other things.  She asked Katy if Katy wanted her to come by and visit her.  Katy said “no.”  When she asked what Katy did want, Katy looked at me.  It almost made me cry tears of happiness.  The doctor took a few moments to talk to her alone, and then came back with someone who could read lips.  I had translate the first visit, but I’m sure that she wanted to talk to Katy without me there.  I feel comfortable with that arrangement, so long as Katy continues to tell me she is OK with it.  Katy did roll her eyes a lot when I asked her about the visit.  She rolled her eyes and shook her head, but I am glad to at least have a second person make sure that Katy is processing this overwhelming life change. 

I also met with Dr. Das, the doctor who will be in charge of cardiology for the next two weeks.  He was a very nice man who took the time to discuss, in great detail, what is going on with Katy’s heart.  The information wasn’t really new, but the detailed descriptions of what EF, leaky valve, etc was greatly appreciated.  We, like with psych, discussed my expectations for communications, and what “reasonable” meant with regards to the time frame, and delivery, of information regarding Katy’s treatments.  Cardiology seemed very willing to attempt to directly communicate with me in a timely fashion.  Psych expressed a desire to calm the tensions that have risen lately, but did require a bit more explaining as to why I wanted to be so involved.  Apparently, at least as I am told, most families are not interested in getting this level of information about their loved ones.  I don’t know what the numbers are statistically speaking, but I cannot imagine simply trusting a complete set of strangers with my wife’s well being, and not wanting to know what is going on. 

Katy’s EF is still at 10-12, but her heartrate, blood pressure, temp, and urine output are all right in line with what we need to see.  Though it is not a guarantee, I feel confident that Katy will eventually overcome this obstacle.  Katy i scheduled to have the trach put in tomorrow.  This should make things easier for her to breathe, allow her to have less discomfort, thus reducing the amount of pain meds needed, and allow her to start trials for swallowing food.  After a few days, they will be able to put in a trach that would allow her to talk.  This will also remove one more obstacle from the path to Katy’s returning to Houston.  Most hospitals will not take an intubated patient, but will take one with a trach.  It is now my belief that the move to Houston SHOULD happen soon.  I emphasize “should” because I believe that to be the best thing for Katy.  Wish me luck as I communicate with the hospitals in the med center.

I want to say a special “THANKS” to Susan from Austin for the amazing CD’s!  Susan sent Katy a lovely card, and 2 CD’s of Susan playing classical guitar.  Katy, myself, and the nurse all loved listening to them. 

I have told, via e-mail, that it is time for me to share another story.  The day Katy and I got married was a madhouse!  I had to get up early to go get the tables and chairs for the reception, Katy and her mom went to the salon to get made up for the wedding.  I drove into Austin to get the chairs, drove up to Georgetown to set up the reception (with a LOT of help from Katy’s sisters and family), drove to Leander to get dressed with my groomsmen, and then raced (definition; drove dangerously fast) to get to the chapel for the wedding.  I remember everyone coming in, I remember the JP arriving, I remember not being able to feel my legs.  The time for the wedding to start came and went.  Now I was worried!  Apparently I paced up and down the aisle (I don’t remember too much from this snipet of time), but a few minutes after we were supposed to start, Katy arrived.  Those minutes felt like hours!  I took my place up front, and the signal was given that we were ready to begin.  The music started playing, the doors in the back openen up, and Katy’s mother led her down the aisle.  They got to the front, and the JP asked “who gives this woman away?”  Katy’s mother replied, “I do.”  Then I took Katy’s hand and we were to look into each others’ eyes while a song was playing.  The song was SUPPOSED to be one that I had written and recorded for Katy.  I had 3 other musicians in a studio for 2 days working on this song.  We even added a string section.  In spite of all that work, someone handed the lady running sound the wrong cassette (yes, cassette….kids, look in up on wikipedia).  The cassette was our reception tape, and LUCKILY the song that was cued was Sting’s “Secret Wedding Vows.”  One song in either direction would have yielded us staring at each other listening to “the Dirty Boogie,” or “Bad to the Bone.”  It was the beginning of what would be a comedy of errors.  Our life is often like that, but what keeps us going is our ability to laugh.  Katy miscarried April 22nd, 2003, Amber’s birthday.  The day she knew something wasn’t right, I called off from work, and we sat and watched comedy central.  Of course we cried, and, as we often do, drank our hot tea while we processed the emotions of losing the baby at the 12 week mark.  Ultimately, it was just another memory.  We got pregnant with Jake later that Summer, and he has been terrorizing Amber ever since.  I love Katy more every time I think of what an AMAZING mother she is.  I may be the one whose crazy antics keeps our life a little more interesting, but Katy is the glue that binds our family.  She is an influence on people very soon after they meet her.  Several of her friends call her whenever someone is sick to see what oils and herbs to use.  Whenever anyone is going through a hard time, they come to Katy, not just to relax, but because Katy’s energy when massaging someone is healing.  The more I know her, the more I know that she is the best thing that has ever happened to me.  Now I am just trying to repay the favor.

Love to all,

Al

Sunday….A Good Day!

I am always cautious to not be over optimistic when a little progress is made, but, after the last few days, I will take this chance to smile!  Katy’s temperature was 98.7 all morning!  This is the first time her temp has been normal, with out meds to reduce the fever, in 9 weeks.  As of my last visit, Katy’s temp for the day stayed between 97.8 and 100.4.  I hope that this means that the antibiotics/antifungals are working on whatever was causing the fever.  Only time will tell, but this is definately a good sign.  Her heart rate and blood pressure were in also very good.  Though she is receiving meds to help these things, I am happy that the medicine is able to get her numbers where we would like to see them.  No procedures happened, today, just the relatively quiet visits of a Sunday in the BICU.

It was nice to have Betta, Thom, and Chris visit this weekend.  Katy smiled so big when she saw Thom in the room, and it melted my heart.  Katy was more awake for the 5pm visit, and it was nice to tell her what was happening with the kids, the house, and some of the news from back home.  I am able to read some of the words that she is mouthing, and she says that she wants to go home. 

I will write more tomorrow.  For tonight, I am going to rest up for the week ahead.

Love to all,

Al

Friday…Better medically, but still frustrating

I would like to start off tonight by painting a mental picture of things.  I hope that in doing so I can help all of you to visualize what a day walking into the ICU is like for me.  I do not feel the need to defend my position or actions, I am doing what I know Katy would want, but I do, in my blogging, try to convey my joys and my fristrations.  I feel like we are all sharing this, on different levels, together. 

I arrive every morning at the parking garage, circle around until I find a spot, and then do my best to remember where I parked.  I am in and out so much, that on mony days I look for my car on the wrong floor of the garage.  Then, depending on where I parked, weather, etc, I cross the street to the hospital.  I make my through the lobby, past the visitor desk, and down the short hall to the elevators.  Once on the 6th floor, I make a right, push the buttin that opens the double doors to the prep area, and then I suit up.  I put on the hair net, the face mask, the cover gown, and then wash my hands.  I then push another button to enter the ICU.  The mechanical doors open up to the same room every time, but the landscape of that room can be different depending on what is happening at that time.  I make my way past the nurses’ station (usually saying “hi” to the ladies at the front, make a left turn, and then a right to look into Katy’s room.  Katy’s door is a double glass sliding door with built in venetian blinds.  The staff can close the blinds for procedures or privacy.  Whether the blinds are open or closed is usually the first thing I notice, even before who is sitting at the desk.  To the left is the station where Katy’s nurse will sit, and I look to see who her nurse is for the shift.  Upon walking into Katy’s room, I make myself aware of a few things, first.  First is the temperature of the room.  At times, the HVAC doesn’t respond and her room gets too warm.  The first thing I see with me eyes is her monitor, and my eyes always make a line for her temperature.  The wall parallel to the door is covered in windows from mid-wall up to ceiling.  The right perpendicular wall is where the access to air, electrical, and all of the machines are, as well as the head of Katy’s bed.  The left wall is mostly covered by a desk filled with supplies, and a small sink that is operated by foot.  I say “hello” to Katy as I put on the latex gloves that are located on the desk, and then go to the bed to spend time with her.  I wash her face, massage her, change the music/tv, open or close the blinds, and various other things while talking to her.  Sometimes I get to brush her teeth, apply lip balm, and help by doing various little tasks that make her more comfortable.  I read her news stories, keep her up to date on the kids, tell her what procedures are planned, ask her how she is feeling, if she is in pain, is she hot or cold, etc.  I try to answer all her questions, ease her worries about the kids/home, and let her know that I am there for her.  Most days, I get to talk to one of the nice nurses about how she did overnight, what has changed in her meds, when bath/wound care is going to happen, if the doctors have come by, which doctors have seen her, and other pertinent information.  Then, before I leave, Katy and I kiss through the face mask.  When she’s awake, her eyes follow me out of the room.  Then I go back out the first set of mechanical (opaque) doors, take of my gown, cap, mask, and head out of the second set of doors to wherever I need to for the 2 1/2 hours before the next visit.

Now, I know that what I wrote is a painfully long and tedious, but can you see it?  Can you see it in first person?  Can you see it 4-5 times a day, every day, for 8 plus weeks?  If you can, then I want you to imagine that you were woken up with a call telling you that the procedure that was scheduled for bedside is now being moved to the OR.  Then 20 minutes later, that she is leaving for the OR.  Then 40 minutes later that they decided not to do the procedure because they were worried about her heart not being able to take the anesthesia.  You have now missed your first visiting time with your spouse, and you are worried about why the sudden concern over this procedure that was sold to you as “so routine,” and “not risky at all.”  You get to the hopital, go through the routine above, and then walk into your spouse’s room to find 5 doctors and a nurse getting ready to do a procedure that no one called you about.  Though the procedure is a simple scope of the lungs, would you be a little thrown?  As your mind is racing from the stimulus overload, the doctor starts asking you to leave.  Would you?  What thoughts would be running through your mind?  Whatever you imagine your answers to be, multiply that by a number you can’t imagine, and add the weight of constant repetition.  That is a day in the BICU.

That is what happened yesterday.  As I wrote, yesterday was filled with fear, anger, confusion, and a lot of unanswered questions.  Today, with the exception of the meeting with cardiology, followed the same path.  I walked in to find Katy awake, and we started to what would seem to be a good visit.  I asked the nurse if cardiology had been by.  She said that they had not, and asked her to see if any notes were added to Katy’s chart.  The nurse said that the last note on her chart, from cardiology, was given at 1300 (1pm) the PREVIOUS DAY!  The day that I spent looking for answers from anyone who could tell me anything, and I find out that there is a note on the chart. The day that, for only the second time since Katy has been in the hospital, she was so unresponsive that I could touch her eye without her blinking…WITHOUT BEING SEDATED.  The nurse could not tell me what the note said.  That, in and of itself, is maddening.  She went and asked a doctor to visit with me.  The doctor came in, the same one I had had the brief altercation with the day before, and said that the note said, and I quote exactly as I was told, “prognosis not good.”  Then he said that he couldn’t tell me anything more than that, and that I would have to wait to speak to cardio.  Once again, how would you feel?  He did say that they did pull blood for viral tests.  That is, at least, progress.

The next two hours were hell.  I could not begin to write what all went through my mind as I waited to speak to cardio.  As I was talking to the case manager, word came in that cardio would like to meet me in the “crisis room.”  That is actually a joke on my part.  The room is now known as the “family room,” but at one time was called the “crisis room.”  When they asked if the “crisis room” was open to meet with me, I didn’t exactly feel warm and fuzzy.  Would you?  The case manager explained things to me abou the name change, and how some of the people still refer to it by the old name.  Anyway, I met with cardiology at around 10am.  The meeting was with the case manager, the resident cardiologist, and a fellow.  Part of the conversation was that psych would meet with me next week.  So far we had addressed two of my issues from the previous day, and cardio was number 3.  The abridged version is that, though Katy’s heart is “really depressed,” it will more than likely get better with time.  There is always the possibility of heart failure, problems, etc, but that, due to her age and level of health, it is feasable that she will reacover with time.  Her fluid output is getting better, and is getting closer to the point that they would like to see it.  Her albumin is low, and they are addressing that.  The heart damage is functional, not physical.  That means that her heart is “stunned,” and therefore nor moving at full capacity, but does not have any holes, tears, or scars.  The good news is that Katy’s urine output, blood pressure, and lack of need for a heart pump are all good.  Her mental status appears to be good, and she is well enough to receive beta blockers 4 times a day in 25mg doses.  We also discussed the requirements for Katy to leave ICU and return to Houston.  I know I have talked with other doctors anbout this, but I want as many opinions as is possible.

Once again, the major frustration of the day was one of communication.  I have had several doctors come up to me and tell me how much they think about Katy, and how much it affects them.  While that is sweet, they don’t have to live with the results of their own actions.  The decisions made every day will affect Katy, me, Amber, Jake, and Arille for THE REST OF OUR LIVES.  So excuse me for not being more relaxed with regards to what is happening with my wife.  Anyone who can’t understand that, should probably not be in health care.  All the nice sentiments in the world won’t make me sleep any better if I have to make a rush, uninformed, decision, without the benefit of all the information possible, and the decision is a wrong one.  I can live qwith whatever happens, so long as I am as informed as possible when making my decisions.  We may find out more info later, and find that we were wrong, but we will have at least made the utmost effort to avoid those careless mistakes.  Unfortunately, is appears that the “standard of care” has no regard for anything other than what they are used to doing.  I will explore all my options, and I WILL NOT stop fighting to gain all pertinent information in a reasonable amount of time.  Katy would want this, and Katy would do the same if it were me in the hospital. 

Sorry for such an emotionally charged blog.  The last 3 days have been emotionally trying, and the stress of these days has been compounded by a horrible deterioration of the attitude of the doctors.  I hope and pray that next month we get a set of doctors capable of handling this better.  If not, then I pray for anyone who has to enter the unit with a rare condition.  I pray for their families, and the pain that they will go through if they have to deal with the “wall” when it comes to communication.  I pray for them because most families don;t have the AMAZING support network that Katy and I have.  If it weren’t for all of the wonderful people doing so much for us, I couldn’t be here fighting for Katy.  Thank you all.  As we get through this, know that we did, in great part, because of you. 

Love to all,

Al

Thursday…more questions, fewer answers

Today started off in a way that would seem to forecast how the rest of the day would go.  I was called at 6am to tell me that Katy was going to be taken to the OR for her trachiostomy.  I asked why, as I had been told that it would be a bed side procedure.  Actually I was relieved, because I felt that she was safer in the OR, but I was also concerned as to why they felt the need to move her there.  The nurse called back at 6:20 to say that the doctors felt that it would be safer in the OR.  I got a call 20 minutes later, from a doctor, to tell me the same thing again.  I got yet another call 20 minutes later to say that Katy would be going to the OR in a few minutes and that she would be in her room by 10am.  I got yet another call 40 minutes later saying that they decided not to trach her because they wanted cardiology to consult before giving Katy anesthesia.

I walked into the ICU at 9am, and was immediately greeted by a chorus of nurses telling me that the doctors were doing a procedure and that I would have to wait.  That was going to happen.  I went into Katy’s room, only to have the doctors tell me the same thing.  I insisted on staying for the procedure.  For the record, there is a generational inheritence of misinformation among most medical staff.  Rules for “visitors” do not apply to “powers of attorney.”  The legal distinction is that “visitors” are there to visit, while, legally, the person holding power of attorney is to be treated as if they were the patient themself.  That means that I legally have access to every procedure that I choose to.  Hospital policy plays no part of determining what I can, and cannot, see.  This is of utmost importance if you are advocating for someone.  Though not pleasant, what is under the bandages, in her lungs, etc is paramount in helping me to make important decisions.  If I rely soley on the descriptive terms used by medical staff, then I am at the mercy of there criteria for each of the terms used.  That is not acceptable.  It is my job, and, in fact, my legal responsibility, to be as informed as is possible.  The procedure this morning was to scope the airways leading to Katy’s lungs.  I got to see the images as the camera went down the breathing tube, into each of the two passages leading to the lungs, and all the way to where the tube divies into the smaller branches of the lungs.  The camera can’t go farther than that.  Dr. Hunt stood with me and explained everything as I was seeing it.  The scope did not reveal anything such as inflamation, mucus plugs, etc that could indicate that the area could be the source of the problems in the lungs.  The X-ray does point to the fact that Katy still has some pneumonia residing primarily in her right lung.

There was a cardiologist sitting at Katy’s station when I got back for the 11am visit.  I told her that I had questions, and she replied that I would have to wait until she returned with the attending cardiologist in a little while.  I have a problem with this.  My problem lies in a lone doctor sitting at my wife’s medical station, reading Katy’s charts, and not being qualified to answer questions.  My other problem with the scenario is that cardiology never returned to see Katy.  Not once!  I sat at the hospital all day, not even leaving for errands/administrative, so that I could meet with doctors that told me they would be there at noon, 2pm, before 5, 5:30, and, as of 6:30, were unable to be reached.  This is 100% unnacceptable.  For some reason, cardiology and psych scatter like cockraoches in the light whenever I request a meeting.  I am so disheartened by this, that, if both of them do not come to find me tomorrow, I will file an official complaint with hospital administration, and possibly the ethics line.  I have requested to see them on multiple occasions, and I haven’t even received a message saying that they were unavailable.  Considering the critical condition of Katy, I am quickly running out of patience with their delays.  I have expressed my concerns with the social worker and the case manager, and the issue still hasn’t resolved itself.  Tomorrow will be the deciding factor in whether we go forward using the existing model for communications, or if we have to involve people at higher positions within the establishment.  This problem is compounded by the very few nurses (most of the nursing staff is amazing) that are just as passive aggressive regarding communication with medical staff.  I called the hospital last night to verify a term regarding Katy’s heart condition.  It is important that I have the correct terms as I relay information to other doctors with whom I get second opinions from, and as I relay information to our family.  This nurse told me that she didn’t know, and that when I came in the next day, if they had time, a doctor might be able to help me with that.  Once again, unnacceptable.  Luckily, these issues are in the minority, but all the more frustrating because they seem to occur only when time is critical.

I raised a concern about the sodium chloride that Katy is getting through her IV.  With a swollen heart, sodium chloride can cause the body to retain fluid.  Though they didn’t seem to think it was a major factor, and they do not want her sodium levels to drop too low, Katy is a little high on the sodium levels and they are switching to sodium acetate for a while.  Though there is no indicators of a viral infection, I am going to ask that the infectious disease team does one.  The doctors didn’t feel that that was needed due to Katy’s lack of indication, but Katy also didn’t have the indicators for strep A in the beginning.  I am not prepared to wait until it is too late to see if we can find a virus. SOMETHING is causing her fevers, and saying “we don’t think that a virus is the cause” is not a good enough reason not to do the test.  I want us to be as damn sure as we can before we rule anything out.

For most of today Katy was awake, in a good mood, and I enjoyed spending time with her.  I brought her a cd of songs that I have recorded, plus one classical guitar piece from a student of mine’s younger brother, Dylan, and she listened to the music as I massaged her, doused her in lavender, and talked with her about the upcoming visit by Betta and Thom, and the following weekend’s visit with Jake.  Katy retained a lot of her memory this time, and was really up to speed.  It is amazing how much her and I can communicate without her being able to talk.  After two days of near non-responsiveness, it was so nice to see her eyes wide open and her smile.

I think what has been bothering me the most is the idealogical battle seems to be the battlefront for my frustrations.  While Katy getting well is the primary concern, how we approach getting her well is, at times, troubling.  I hear the phrases “standard of care,” “protocol,” and “not indicated” every day.  I have heard it said that doing the same thing over and over, and expecting different results, is the definition of insanity.  With a mortality rate of (depending on who’s numbers you believe) between 70% and 97%, why on earth would you keep doing the same thing?  No one with half a brain would invest money in a business with those numbers, why are we so accepting to invest our faith in medical procedures with results that bad?  I’m not saying that there is no merit to any of the procedures.  Most of the procedures are why Katy is still alive.  It is the mindset that bothers me.  Why do I have to ask for a virus test?  If Katy has an unexplained fever, and she is not testing positive for bacterial and fungal, then why the hell would we not test for a virus?  Why is it so unnerving for the medical staff to deal with a husband that wants to be informed?  Though there are those that are very willing to keep me in the loop, there are those that I have to “educate” on an almost daily basis.  Why are the doctors so willing to discount items, such as my request for a swab to see if Katy had a yeast infection, simply because they don’t think it could be the cause?  We are dealing with a WHOLE lot of “we don’t know.”  When that is the case, NOTHING can be overlooked as a possibility…especially in a case as rare as Katy’s.  This approach to medicine is part of what Katy and I have fought against in our lives.  The “standard of care” seems to be stand by the dyke and see if it springs a leak.  I say we shore up the dam before it leaks.  It may still spring a few, but we will have less to deal with, and be more prepared to do so, if we are proactive instead of reactive.  Not my thoughts…my beliefs.  I do believe that the staff cares a GREAT deal for all of the patients.  It takes a special kind of person to work on the 6th floor, and I applaud them for being there.  I do, however, hope that this message will sink in to at least one of the medical staff that reads this.  Though there may not be a study to show the tangible effects of having music, massage, family presence, etc, the results of the patient having exposure to things that are important in their life outside of the hospital , cannot be underestimated.  Sometimes we all can be buried too deeply in the areas of our own expertise, and, as a result, can miss the obvious.  I wouldn’t care if it were my car, or a guitar, but this is my wife, my lover, the mother of my children, and my best friend.

I will write more soon.

Love to all,

Al

Wednesday…Another step backwards

Katy’s temperature spiked last night, and again this morning.  For the first time since last week, Katy had a temp as high as 104.  As I wrote yesterday, they intubated her last night due to her labored breathing.  The cause of the difficulty is partly due to the congestion in her lungs, and also due to her heart overworking.  In a previous blog, I wrote about Katy having a heart of function of 30, normal being 60.  Her level rose as high as 42, but in the last 2 scans lowered to 22, and then 12.  The doctor explained to me the difference between two types of heart failure.  To clarify, “failure” is a term used any time an organ is not functioning within parameters.  I know that when I first heard the term, I thought it meant complete failure, but that is not the case.  Still, it isn’t a good thing.  One type of heart failure allows for the use of beta blockers to help lower the strain on the heart.  The other type of failure, does better to allow the strain on the heart, without beta blockers,  simply because the heart needs to get blood to all of the body.  I believe, if I understand it correctly, that is a systolic failure.  I’m still learning the cardiac side of things.

I signed consent for the trachiostomy, today.  They will put it in tomorrow morning.  I hope that this will help ease some of the burden that Katy is dealing with physically.  They took blood and urine cultures to see if anything is able to be detected.  As much as I don’t want Katy to have an infection, I do wish that we could find out what is causing all of these setbacks. 

I am becoming aware of how much of an emotional toll this is taking on me.  I am taking some time today to try and recharge my batteries.  While Katy is stable, I am taking the time to enjoy a wonderful meal from one of the nice ladies from the mother’s group, and take some down time at the apartment.  Tomorrow will come quick, and I need to be up to par. 

Until we see what tomorrow brings, please keep Katy in your thoughts and prayers. 

Love to all,

Al

Tuesday…a small step backwards, but still hopeful

Tonight will be a very brief blog.  The pollen count is ultra high, and I feel like I have been hit by a truck.  I’m hoping a hot bath will make sleep come easier, and that I might actually sleep through the night.  Wish me luck.

Katy’s temp and oxygen levels were good all day, but the congestion is hard for her to cough up. She just doesn’t have the strength to process it yet.  They intubated her again this afternoon.  Tomorrow morning I will meet with the doctors to see what the next step is.  There is the possibility that I will need to consent to the trachiostomy.  As of 8:30 local time, her temp did go up to 103 for the first time in 4 or 5 days.  I will be checking in with the nurse again at 10:30 to see if the tylenol and ice are helping.

Again, sorry for the short post tonight, but I can hardly see straight.  Tomorrow is a new day, and Katy and I will face it together. 

Love to all,

Al

Monday…continued hope

Even with my timeline all out of whack, Monday still feels like Monday when it comes to getting out of bed.  That all changed when I got to the hospital.  Katy is still breathing on her own, and her temp did not spike over night.  She was alert this morning, and seemed to have a good night all around.  I talked with the doctor this morning, and, if everything continues as it has been the last few days, I will be able to move her to a Houston hospital (provided we can get acceptance by a facility that can offer her the correct care) in the nest few weeks.  The criteria would be based on, if in the next two weeks, Katy was still breathing on her own, nothing else pops up medically, she continues to improve with regards to lung health, no more infections arise, and her wounds continue to heal.  I try not to be too excited, incase things change, but just the fact that we were talking about going to Houston made me happy.  Honestly, I also felt a little pang of hurt.  I’ve seen the staff at this hospital for more hours a day than I do most of my friends and colleagues.   The nurses have been so good to Katy, and I will miss them.  That being said, I cannot wait to be with my kids again.  I also think it will good for Katy to be able to see her friends again.

Today was a busy one for all of the peripherals around Katy.  She received a dressing changs and bath this morning, and then had a visit from the speech therapist.  Speech therapy does the swallow test to see if Katy can start to accept food orally without breathing any in.  Due to the congestion, and her sedated state, it was hard for the ST to tell how Katy did.  She agreed to have me with her for tomorrow’s swallow test.  I should be able to help her interpret for Katy, and Katy might be more awake if I am there.  During wound care, they removed the VAC from Katy’s leg, removed the staples from her upper stomach wound, removed the suchers from her left arm, and changed to a different kind of treatment on her right arm.  The new treatment involved using a ribbon soaked in sodium chloride (I hope I have that correct) that helps the body to expell some of the fluids in the wound.  They also added this same type of treatment to her right leg wound.  The VAC on her belly (the only VAC remaining) was changed today. 

Physical therapy will evaluate Katy tomorrow during rounds.  After that, they will meet with me to discuss what they think the plan will be, or if they even think she is ready.  Katy’s liver enzymes stayed where they were, meaning that she is not reacting to the glutamine/probiotic mixture negatively.  She is still on the probiotics, and I am thankful for that.  She does have a bit of congestion in her lungs, and she coughs to try and get it out.  Sometimes she doesn’t have enough force behind the cough, and they are able to suction it out.  Though this isn’t a pleasant experience, having a small vacuum cleaner shoved into your throat, it does make it so much easier for her to breathe.  I hope and pray that she continues with all of this progress.

It was very sweet of Lucille, Bill, and Pat to come and spend the weekend here.  It was also nice for them to take me and the kids to dinner/breakfast.  I really enjoyed seeing Amber and Jake, and I can’t wait for my whole family to be back under one roof.  I know that I will be there before Katy, but, when we are all together, I feel that I can handle anything life throws at me.  It is funny how that feeling changes when we are apart.

There are too many people to list for my “thanks” on this blog, but know that MANY people (including some of my students) have done such wonderful things for my family.  Soon, I hope to have a get together and hug every one of you who have done so much for my family.  Thank you all.

As part of my daily routine with Katy, I apply lavender oil to her, massage her, clean her face, place cold rags on her head, adjust her bed, etc.  I gave her three massages yesterday.  twice she fell asleep in my hands, nuzzling into my touch as I rubbed the lotion into her neck and shoulders.  I know that the benefits of massage may be lost on “standard procedure,” but Katy would be wanting it, and it is nice to feel a physical connection with my wife. Even though she can’t yet speak clearly, words aren’t needed.  On the last time I was massaging her, she told me that it had been so long since she worked on me.  She asked if I wanted her to massage me.  I smiled and told her that it was my turn to take care of her.  Massage was not a job for Katy, but a passion.  Her energy, her technique, her inate ability to find the source was not anything that can be taught at a school.  Even though massage is not in her future (except for all the ones I will be giving her), I know that she will want to continue studying natural medicine, herbs, and homeopathic medicine.  She is a great healer, and this will not stop her from continuing to do what I know is her life’s work.

It gets hard, sometimes, to select a story to share.  As I have said before, some are very intimate, some are loaded with inside jokes, and some may involve other people who I would, out of respect, want their permission before sharing.  That being said, life with Katy is never dull, and I am sure the same would be said of me.  Even though we have had our fights about my travel schedule, or anything else that couple do, we never question our love for one another.  The biggest part of our daily lives are our children.  Amber, Jake, and Arielle are our world.  Arielle having been born right before Katy was hospitalized will, I’m sure, add to the stories as time goes on, but Amber and Jake always keep us laughing.  Sometimes, as parents, we have to act stern and redirect the kids, but then go to our room and laugh about it that night.  We remember being kids, and enjoy watching our children grow…even if we sometimes miss them in the different phases of growing up. 

 I watched a show on TV called “RV Crazy.”  It reminds me of our time living in the confines of a 35′ travel trailer, and how much fun that was.  I saw a story on an RV named “Draco,” made by a man for his wife who suffers from chronic arthritis.  This RV was amazing, and completely comfortable for the two of them.  It makes me think of our plans to travel in an RV when we get older.  Some of my favorite memories in our RV were our nightly walks.  Katy, Amber and I would walk along a path behind the RV park.  The path led between houses with horses and cows, and we would stop to pet the animals on our walks.  We would see deer, rabbits, snakes, birds, dogs, cats, squirrels, and all sorts of insect.  Amber learned to ride her bike in the park, and had her first “big girl” ride on the trail behind the RV.  Life was simpler then, and that meant more time spent doing things together.  We used to, all 3, curl up in the living room, and watch movies and eat popcorn.  That has turned into a tradition with us.  Movie, popcorn, hot tea.  Stormy nights in a small space make movie and game night fun.  You get to listen to the rain, a favorite of Katy’s, and spend time together.  I can’t wait to do that again!  I have my firefly DVDs all ready for when Katy is ready, and will stock up on Ealre Grey soon!

Love to all,

Al

Sunday, Sunday, Sunday….We need 2 more weeks like these 2 days.

Sorry…I am only writing a short blog tonight.  I will catch everyone up on all the fine details this week, but I will get to the juicy stuff for tonight.

The kids and I awoke to what we thought was thunder, but turned out to be the demolition of Texas Stadium.  We watched it on TV, and then heard it outside as the sound waves made their way to our part of town.  As I wrote earlier, Katy is extubated, and has been breathing on her own since yesterday.  The CVST doctor removed her last remining chest tube, today, leaving 2 vacs, a feeding tube, and her A line/central line left.  She also still has 2 areas on her hips that will probably need skin grafts, and some packing on 2 of her limbs.  As much as that sounds like, I can’t help but be happy to have her breathing on her own.  Provided that nothing else pops up, the plan is for speech therapy to come in and try to see if she can swallow some food this week.  This should also open the door for physical therapy and psych to come in.  After reading several articles from counselors, psychiatrists, and families of long-term patients, I am even certain about my decision to require that no one sees her without me qualifying them.  The quality of care that Katy receives will be of the utmost importance in her recovery.  One mis-step, or poorly chosen words, could set back her mental acceptance of her situation.  I am not prepared to gamble on my wife’s well being.

I wanted to say “thanks” to all the wrestlers who gave their time for the shows that took place this weekend.  One thing I have learned about the pro wrestling communty is that wrestlers are always willing to give of themselves for a cause.  Thanks to all my brothers in the ring.

Love to all,

Al

Saturday night’s alright for…..

Today was a good day for Katy.  I hope with all my might that her progress continues without anything else popping up.  Katy passed her SBT this morning, and was extubated this afternoon!  Her heart rate, blood pressure, and temp did go up a little, but were on the way down this evening.  She looked great, and I am looking forward to our conversations as her throat recovers from all those days with a tube in it.

Katy’s dad, mom, Pat, Amber, and Jake all came to visit this weekend. I took the family for a sushi dinner last night, and enjoyed driving around the Greenville and SMU areas. We enjoyed all of our visits with Katy, and had a great breakfast at Market Diner.  Market Diner is a quaint little greasy spoon with a great waitstaff, and has become my regular coffee and pancake spot.  I HIGHLY recommend this restaraunt for anyone visiting the Dallas area.  This afternooon I got to take the kids for some gokart racing.  We had a blast, and even Lucille and Bill joined in and drove some karts.  Then we found a good restaraunt, with an AWESOME soul band, called Kay’s.  We had a great dinner, and are now retiring for the evening.

I hope you all have a great Sunday.  I know I have said it before, but don’t let a day go by without telling your family and friends you love them.

Love to you all,

Al

Its Friday, I’m in Love….

For those of you who don’t know, the title of today’s blog is a song from the Cure.  I said that there might not be a blog this weekend, but I had a few minutes and wanted to write a quick one to let you all know how Katy is doing.  Katy has stayed between 100.5-103 all last night and today.  She hasn’t had any irregular heart beats since early this morning, and she seems to be responding very well to the Beta Blockers she is being given for her heart. 

I met with the dietician today, and she is going to reduce Katy’s probiotics from thre times a day to twice daily.  The probiotic she is being given is really good, but it is mixed with glutamine.  The glutamine can affect the liver, and Katy’s liver enzymes rose slightly.  The dietician thinks that, maybe, they are giving one dose too many.  Three doses daily is considered a full dose, but, due to Katy’s reduced bady mass, might be too much.  They will check her liver numbers again on Sunday or Monday to see if there is a change.

Pat, Lucille, Amber, and Jake arrived tonight, and we went out for a lovely sushi dinner.  It has been so nice to see my kids again….I can’t wait for our full day together, tomorrow!  Life felt a little more normal with them here.  Amber talked about school, and Jake was hitting on the pretty blond sitting next to us….just like a normal dinner with the Hayes’.

I hope you all have a great weekend. 

Love to all,

Al

Thursday…Wound Care

“I used to be lost in the shuffle. Now I just shuffle along with the lost.”   Unknown

I just got back from a very nice dinner with some friends, Herb and Barbara.  I have found a nice little Mexican restaraunt close to the hospital called El Fenix.  The food is good, but it is no El Ranchero (Kingwoodians know.).  I am really looking forwad to the visit by the kids, Lucille, and Pat this weekend.  Because of their visit, THERE MAY NOT BE A BLOG UNTIL SUNDAY.  I will try, but I haven’t gotten to see my kids much, and I want to soak up this chance to hang with the kiddos.

Katy’s fever did rise a little for a while today, but she stayed between 101-104 all day.  The doctors and nurses spent a bit of time trying to find the right balance of adding/taking off fluids from Katy’s body.  The fluid level affects her heart and blood pressure.  Today, motrin seemed to lower her urine output, but the lasiks (sp?) got the output back up.  For the most part, Katy stayed the same all day. 

I did ask to be present for wound care, and VAC changes, today.  I don’t always do so, but I do think that it is important that I see under the bandages periodically so that I have a visual representaion of the progress of the wounds.  I got to see Katy’s back for the first time in 2 weeks.  It looked good.  There doesn’t seem to be much happening there, but I’m glad I got to see it, and the only opportunity is during her wound treatments.

I also was present for her VAC changes.  Thispart  is little more graphic in nature.  Once the VAC on Katy’s stomach was removed, I was staring at her exposed bowels.  The last time I saw this wound it was closed from the original surgery.  During her wound debridement, the doctors removed necrotic tissue, thus opening the wound down to the bowel.  Though it was weird to see that much of my wife’s insides, I now have a better idea of what “full recovery” will entail.  Her leg seems to be healing nicely.  The last time I saw her VAC removed, what was exposed looked bloody, juicy, and had a lot of flotsam exposed.  Today, her leg wound seemed much more stable.  As with the stomach, blood was not flowing freely out of the wound, and the muscle seems to be in good shape.  The depth of the wound is probably 3″ into her leg.  The VAC nurse switched from the less dense grey foam to the denser white foam.  The nurse and doctor both think that the wound is healing well.

I met with the on-call doctor this afternoon, our daily meeting, to discuss any changes in Katy’s condition.  For the most part Katy is the same.  All of her cultures continue to return negative.  That being said, the doctor feels that Katy still has pneumonia and that is what may be causing the problems.  They put her on antibiotics a few days ago, and they plan on completing the 7 day course to see if they can reduce the pneumonia.  As usual, through all of this, Katy looked beautiful, and her face has a nice color to it.

One day Katy and I were driving down Loop 494 in Kingwood (in the Jeep), when we noticed something in the road.  We stopped, blocking traffic, to rescue a turtle that was trying to cross the road.  He had been hit, and had a little damage, but seemed like he would be ok, provided that we got him out of the road.  We were new to Kingwood, and didn;t know where all the parks were yet.  We were trying to think of where we could set our new friend free, when Katy remembered the park at the end of Woodland Hills.  We drove our Jeep out to the park, and took our slow moving friend to the water’s edge.  One look at the water and he shot out of Katy’s hands and into the lake.  Turtles have a reputation for being slow, but this little guy was a rocket in the water.  There were so many times when Katy and I would go out of our way to save an animal in distress.  It was one of the things that we loved about each other.  It still is.

Thanks to all of you who have sent me your CD list.  Very cool stuff.  I even heard from a high school buddy, Chris, who had a couple of the same songs I did.  One day I hope to be able to reply to each of you who have written. 

Love to all,

Al

Wednesday…some answers, some questions

“In order to gain anything, one must first lose everything.”  The Buddha

Katy’s fever stayed in the 101-102.5 range all day, at least until this evening when I left the hospital.  I usually call the night nurse at around 11pm and check on her then.  Her C Diff, and all other cultures, came back negative for infection.  The doctors still have her on a few antibiotics to make sure, and they took a chest x-ray to check on her heart and lungs.  She failed her SBT (spontaneous breathing trial), for a second time, due to hyperventilation.  Her respiratory rate is coming down slowly, but is directly connected to her heart rate.  Her blood pressure also rose a little today, but all of these numbers would have to stay in these trends for much longer than a day for anyone to say that these are a truly signs of anything.  If she continues on this path, without recession, then we will have something.

Because of a text from a friend of mine in the medical field, I did ask the doctors about sever cytomegalovirus, Q fever, C reactive protein, AST, and ALP.  There was no indication or positive results on any of those.  Her CT scans didn’t indicate any viral infection, either.  For the most part, today was spent with Katy sleeping during all but the 5 pm visit, and me doing a lot of administrative work between visits. 

One positive outcome of today was me getting a little clearer definition of some of the terms and criteria used in Katy’s case.  The word “sepsis” has different criteria depending on which team of specialists you talk to.  While I won’t go into each of the different ways that the teams use, I will say that I now feel confident in what we will call the varying states of Katy’s progress.  With regards to “sepsis,”  Katy is in an in-between state.  Of the indicators that would define her as being in sepsis, she is 1/2 positive, and 1/2 negative.  It means that she is not in the clear, but making some progress.  I was also able to start the conversation about what would have to happen for Katy to return to a Houston hospital.  Unfortunately, the process is full of variables, each to an exponent of 100.  Between Katy’s condition, the timing, the medicaid process, available beds, etc, the process is a lake of turbulent and murky water.  I do feel strongly that Katy needs to get back to Houston as soon as is feasable, but onyl if we can get her into an equal, or better, facility with regards to quality of care.  Anyone who knows anything about this, please let me know.

The QLS and Museum fund raising events are promising to be wonderful events.  None of these, or all of the other events, would be possible without the time, hard work, love, and attention put into them by our wonderful friends.  I know that Katy’s outlook on life can’t help but to be positive with the knowledge that so many are willing to give so selflessly.  Thank you all.

Instead of a story, I want to invite all of you to do something that I ask all of my music students to do.  I ask all of my new students to make me a CD.  I ask them to imagine that they will be alone on a desert island for 6 months.  There will be food, water, shelter, a cd player, and this CD.  This will be there only form of entertainment that they don’t create while on the island.  What is on the CD?  Now, I’m not asking everyone to make me a cd, simpy to list what songs would be on yours.  A CD can usually hold about 21-25 songs (WAV format).  So, if you will humor me, list the songs, artists, and if it is a version that comes off a specific album/performance.  I find that everyone’s playlist is usally acombination of predictable and surprising to anyone listening to it.  So, take into consideration that this would be your ONLY music for 6 months.  You would need songs for all of the emotions that might feel while in solitude.  I won’t hold anyone to their list because what you would put on this list might change in a few weeks, but it is still, usually, a very interesting experiment.  I will list mine below.

1. Gov’t Mule – Soulshine         The Deep End Vol 1

2. KISS – Black Diamond         KISS Alive

3. Kermit the Frog – Rainbow Connection    The Muppet Movie

4. Lisa Ashby – Honest I Do           Album still in production

5. Seth Walker – Steady              Seth Walker

6. Allman Brothers – Whipping Post     Live at the Fillmore East

7. Albert Collins – I Ain’t Drunk          Live BBC Sessions

8. Johnny Winter – Its My Own Fault     Live from Woodstock

9. Gov’t Mule – On the Banks of the Deep End      The Deepest End Live

10. Louie Armstrong – What A Wonderful World      20th Century Classics

11. Nat King Cole – Cottage for Sale                        20th Century Classics

12. Ace Frehley – Trouble Walking          Trouble Walking

13. Jerry Lee Lewis – Lucky Old Sun         Great Balls of Fire Soundtrack

14. Lori Carson – Fall In the Light             Strange Days Soundtrack

15. Buddy Guy – Champign and Reefer           Best of Buddy Guy

16. Eric Clapton – Old Love                                 Unplugged

17.AC/DC Back in Black                           Back in Black

18. Back Door Slam – Real Man

19. Stevie Ray Vaughn – Dirty Pool    Live from Carnegie Hall

20. Mozart – Requiem               Amadeus Soundtrack

21. George Jones – He Stopped Loving Her Today         Best of George Jones

22. KISS – Animal         Sonic Boom

23.  The Grateful Dead – Long Strange Trip                      Live from Munich 1972

24. Dr. Hook – Cover of the Rolling Stone                       Best of Dr. Hook

25. Jimmy LaFave – Never Was A Moment                  Texoma

I hope you all enjoy this little list making exercise, and remember, never let the music in your lives stop.

Love to all,

Al

Tuesday…the continued rollercoaster ride

I always struggle with how to start off the blog.  Sometimes, I have trouble not just jumping right in to whatever joy or frustration I am feeling on that day.  Other days, I try not to just jump straight to medical facts because I don’t want this to be like a stock ticker…just people watching numbers go up and down.  I had written a few paragraphs, but then decided to scrap them.  This happens often, as I don’t always feel that I want to put into permanence what I may not feel so strongly about as time passes.  Who knows, maybe I will wish I had just vented?

Today was a day filled with frustration (at least the first 75%).  Katy’s fever started off in the 104 range, but did come down as the day wore on.  When I left the hospital, she was around 101.2.  After some pushing on my part, the doctors agreed to, and did, begin to give her probiotics in her feeding tube.  They also agreed to let me use an astringent such as witchazel to clean her face.  I know that they don’t feel that these are beneficial, but Katy would want them done, and she would feel the need to supplement her natural flora after the onslaught of antibiotics.  Considering the the HUGE role that the intestines play in the immune system, I feel that, even if it doesn’t help her current fever, that we need to do whatever we can to build up her immune system in advance of anything else popping up.  I’m tired of just putting fingers in the dike.  I want to get ahead of the curve by preventing future issues.

I met with the cardiology team to discuss the condition of Katy’s heart.  It now appears that Katy has had damage in her heart.  It was desribed to me as a “shutter,” meaning that the heart muscles are not moving their full range of motion when pumping.  This explains the elevated heart rate and the lowered blood pressure.  Her heart is at “30,” and a normally functioning heart would be a “60.”  This visit was the cause of most of my frustration, today.  It wasn’t the news about her heart, I wasn’t really surprised by this, but rather the demeanor of the physician.  I won’t go too far into it, as I hope that we are beyond episodes such as today’s, but I will NOT tolerate a patronizing tone, or a “we are giving her medicine for it” with regards to Katy’s care.  I, very reasonably, expect all medical personel to let me know what the medicine is, what the doses are, the length of time, the criteria for stopping the meds, possible side effects, and any other pertinent information with regards to treatment.  Short of that, and we have a problem.  I hope that, as a result of our “discussion,” that no one else will make the mistake of approaching Katy’s care in this manner. 

The doctors are giving her a medicine to remove some of the fluids in her body, but have to be careful due to her blood pressure dropping as a result of this.  Katy’s veins are vasodialated (if I understand correctly-expanded…more porous, thus letting fluid through the walls), and this is why the heart will beat with a certain amount of pressure that doesn’t translate to the rest of the body.  As a result of this, her heart beats faster to try and maintain pressure in her other regions.  After she is extubated, and her blood pressure is stable, they will be able to give her some other medications to help heal her heart.  There is a small possibility that it may even correct itself, but I will reserve hoping for that until later. 

What I have been trying to communicate with the staff is that whether or not these things (probiotics, lavender oil, astringent) helps her medically or not, they will make her feel better, and she would want these things if she were awake.  I don’t think that there is enough attention put on the intageable benefits of comfort items.  Katy was sedated due to wound care, and slept through the loud voices of my conversation with the cardiology team, but woke up and smile so sweetly at me when I played a Seth Walker CD, put a drop of lavender oil where she could smell it (thanks, Mom, for the oil!), and massaged her neck and shoulders with lotion.  The look on her face was one of relaxation, and love, and then she fell asleep.  It was so nice to see a truly restful expression on her face, as opposed to the medically “knocked out” face I am seeing most days.  Only a spouse/life partner would know the difference, and that is something that no one can go to med school for.

I would like to thank Dr. D (he knows who he is) for the kind words, today.  It was nice to hear that none of the staff begrudges me for my actions (not that it would stop me), and that they empathize.  I would say sympathize, but you can’t until you are in this situation even begin to imagine.  Thoughts, feeling, and emotions have popped up in me that I never considered would.  I have done my best to process all of these, and have even decided that I am now ready to talk to a professional.  I plan on meeting with a counselor soon, and making sure that I am taking the time to allow myself to process.  Katy will need me to be 1000% (yes, 1000%), and I need to make sure I am. In the interim, I am taking advantage of the generously donated time of a great social worker who takes the time to check on me daily.  Thanks!  Speaking of counseling….the psych team is still conspicuous in their absence.  Whether I scared them off, or they don’t feel that Katy is ready yet, if they don’t respond to my requests soon (or at least send a message through the social worker) I will start roaming the halls looking for them.  Kidding….kind of. 

When deciding on which memory to share with you, I try to think of things that are 1-appropriate, and 2-that aren’t loaded with references to things that only we would understand.  I’m sure that every couple has those things that, if someone else were to witness, would need an explanation.  For example, Katy and I do a thing where we open our lips with our teeth together, and make a small chewing motion.  This is a way of saying “I want to eat you up.”  We adopted this behaviour from our dog, Angel.  She cleans her son, Roddy, constantly.  We were so amused at how much she takes care of dog that outweights her by 50 pounds, that we just started doing it.  She did this motion to a nurse one day when he tried to brush her teeth.  Her thought she was mad at him.  I had to explain that she REALLY liked it when they brush her teeth!  Another weirdness of ours is a whistle we use to locate each other in stores.  It was the favorite whistle of Miranda, our African grey.  Unfortunately Miranda is no longer with us, but we still do all of her whistles.  We sometimes communicate many quick feeling via small whistles that only we would know….except the wolf whistle that EVERYONE knows what it means!

Katy and I had purchased 1.2 acres of land in Lakeway, TX, and a manufactured home to put on it.  We cleared the very overgrown land, and made all the arrangements with the contractors.  Katy, Amber, Miranda (the bird), and I were ready to move into our new house since we were told that everything would be ready.  We sealed up all the loose ends on our current living quarters, made arrangements with the utilites, and moved our stuff in.  Our first day was finally upon us.  I carried Katy across the threshold, and turned on the light switch.  Nothing.  No lights.  No water.  No nothing.  Somewhere things got messed between the utilities and the contractor.  We were stuck.  We bought water, cooked on a grill, and (thanks to a neighbor) ran a 200′ romex line with 2 plugs on it.  The thing with a 200′ long line is that you don’t get much electricity at the end of it.  We were OK until the surprise freezing weather hit.  During that time, being animal lovers, we rescued a 4′ long iguana from an abusive situation.  In order to rescue this handsome boy, I paid WAY too much money to the abusing family.  But we couldn’t stand to see him continually tortured.  His tail had been mostly bitten off by dogs, his skin had burns from a fire, and he was kept in a damp, rusty, wet, cage in the cold with no heat lamp.  We couldn’t stand it.  The weather got very cold, for Austin, and it started raining.  We took our new family member home, and I spent 2 hours building a makeshift cage out of lumber and chicken wire.  We moved our queen size matress to the living room, and placed it beside the fireplace.  We lit a fire for warmth, and had Amber, Katy, Miranda, and I in the bed.  We allowed all forms of electricity to go to creating heat for Iggy.  The whole night was spent with the bird biting me every time I rolled over!  We lived that way for a week and half.

Iggy turned out to be a great addition to our house.  We had Angel Dog, Miranda Grey, Iggy, and Brielle the python.  Katy and Iggy became best buds.  I would come home, after a long day at work and wrestling practice, to find Katy laying in the couch with Iggy stretched out on her body lengthwise.  She would be stroking him as she watched TV, and they would both be eating grapes.  She loved him even though his nails cut up her arms when he tried to grab her as she moved him.  People would ask Katy (very quietly) if she was a “cutter.”  She would have to explain that was just from her Iggy.  One night, Iggy got out of his outside cage.  The weather had warmed up, and we built an outside enclosure for him.  During a brief moment with the door open, he made a break for the nearest tree.  This was not unusual, and we would usually let him sun in the tree for a while before putting him back in the house where we just let him roam free.  This night, however, Iggy climbed high.  The weather was changing, and a storm was coming in..STRONG.  Well we couldn’t just leave a member of our family out in a terrible storm.  We devised a plan, and this is how it went.  Amber grabbed one of my spotlights from in the house.  I grabbed the machete, and Katy positioned herself under the tree.  By this point it was raining, thundering, wind blowing….monsoon-like weather.  Amber located Iggy with the spotlight.  I climbed up the tree as far as I could, and started hacking away at the branch that Iggy was on.  He was still 12 feet or so past where I was cutting, but the tree wasn’t thick enough to hold me (No fat jokes, Chris).  I cut the branch until it gave, and Katy caught the branch and Iggy.  We all went inside, soaked, and dried off.  We gave Iggy his favorite snack, grapes, and laughed about it the rest of the night.  That is the kind of woman Katy is – willing to risk herself for others…even if the “other” is a reptile.

Love to all,

Al

Monday…A new day..new questions

I waited a little later than usual to blog tonight because I wanted to make sure that Katy had a good trip down for a CT scan of her sinuses.  I won’t have the results until morning, but she did fine on the trip and is resting in her room.  Katy’s fever has been coming down, but it still is requiring medicine to control her temp.  She has been between 101.5 and 102.5 pretty much all day.  I have received several e-mails from people with suggestions as to what might be causing the fever.  Katy’s cousin from Georgia told me about C Diff.  C Diff is a bacteria that sometimes grown in the colon after prolonged antibiotic treatment.  The doctors don’t think this is the case, but did take a culture to make sure.  Someone else suggested hormones, or lack thereof, as the cause.  She has been checked for that and is doing fine on her hormone levels.  I thought of the need for probiotics to replace the flora that has been killed by the antibiotics.  The doctors don’t think so, but I have asked them to see where is she is with her flora levels.  I am asking for probiotics to be given in her feeding tube.  I am also planning on asking OB/GYN to check for yeast infections.  Whether a yeast infection may, or may not, be the cause, it is a common side effect of antibiotics.  We will see how tomorrow goes.

Katy had her VACs changed today, and her wounds are looking good.  The VAC  nurse told me that the wounds showed no signs of infection.  So far, none of her cultures have been positive for infection, either.  I hope that the spllen was the cause, and that we will continue to see improvement as she heals.

I want to thank Stan Callahan for giving me time on his IndyWarz Radio show.  I was able to address some of my wrestling brethren, and help promote the benefit wrestling show on the 11th at Rock Wine Blues in Atascocita.  It means a lot to me that these wrestlers are giving up there time to help raise money for my family.  I also want to thank my new friend, Abby.  She has been very giving in sharing her family’s loss, and has been very sweet to check in on me every day. 

Please say a prayer for a woman that has recently come to the ICU.  I don’t want to say her name or situation due to privacy, but the way that she found herself in this ICU is beyond my realm of understanding.  I feel deeply for her family, and I hope that she will recover.  On a brighter note, the little girl that was in the room adjoining Katy’s is being released from the hospital this week!  I am so happy for her and her family.

I will write more tomorrow (including a story), but, for now, I am going to rest.  I will have a full day in the ICU tomorrow. 

Love to all,

Al

Weekend Update #2

I left the computer up while I was doing some domestic duties (laundry, dishes, etc), and saw the screen saver when I came back.  It says “Happy Mother’s Day.”  I bought Katy the laptop for Mother’s Day last year, and just had to think that it was ironic that this computer is now my main means of communicating with the outside world about Katy.  Often, as I type or use my touchscreen phone, I can’t help but think of all the things that will be difficult for Katy when she comes home.  I read an article in the news about how the new interface for all technology will be sensors on our hands because the technology is getting to small for our fingertips, but that they want to make the technology even smaller.  I wonder if the inventors of this technology ever stop to think about the disabled?  I know that we will either find people who have developed ways around these issues, or we will design our own solutions to these problems, but I can’r help but to look at every physical act I do differently.  Everything from the size of the elevator buttons, cellphones with touch screens (that are body heat sensitive), and so forth, have all made me try to think of things from the point of view that Katy will have when she leaves the hospital.  It hurts me every time I see nail polish, shoes, and rings Interesting how these thoughts actually make me want to go clothes shopping with her!

Her temp rose a little this afternoon.  She went as high as 40.1C (104.1F), and then came down to 39C (102.2F) after a tepid bath.  I find it interesting that her temp lowers after baths, but doesn;t respond very much to Tylenol/Ibuprofen/Motrin.  Another interesting thing to note is that the ice bags on her torso melted completely after 2 hours, while the ones on her head still had ice in them.  I am going to bring this up in my meeting with the doctors in case this has any bearing.  Also, Katy’s sweat is very sticky, almost like Vaseline.  I am wondering if, due to this build up of sweat, her body isn’t able to release heat like it should?  She is being bathed every day, but I don’t think they will scrub her clean the way she would.  These are just some thoughts that I am rolling around in my head.  I hope that through the process of all of this collective brainstorming (docs, nurses, me, blog-commentors), that we may find what is causing this fever to remain.

I had a great weekend with Chris and Kilee, and I am looking forward to more visitors this week.  My mom and step dad, Chris’ parents, Katy’s mom, Pat, Amber and Jake are all coming up this week to visit Katy.  Though I have relished my alone time (it helps to get things done quickly), I am glad for Katy that so many people want to come and see her.  I am even more glad that everyone could work it into their schedules to do so when it was convenient for me also.

Katy and I used to own a Jeep Wrangler.  I LOVED my Jeep!  However, due to my job that required me to travel so much, the Jeep became impractical for me to drive.  Katy and I switched cars so that I would have the better one for long trips, and she became the hot lady in the cool, green, convertible, rock-crawling SUV.  It used to make my heart race when I would see her driving the Jeep with her blond hair blowing in the wind.  We were living in Austin, and used to do a bit of off roading.  When Amber was younger, she would get buckled in to the back seat as my friend Jason and I would go on our rock crawling afternoons.  For those of you who don’t know, rock crawling is the kind of off roading where you put your vehicle at very scary angles (very slow speeds) so that you can climb up steep, rocky, embankments.  Amber would play Barbies in the back seat while we went through miles of trails.  One day Amber and I saw a school bus that had slid into a muddy ditch and had gotten stuck.  Amber saw this and said, “If that were a Jeep bus, they wouldn’t have gotten stuck.”  So our family used to go on what I liked to call “combined interest” trips.  I wanted to off-road, Katy wanted to see nature, and we both wanted to spend time with Amber.  So we would load up the Jeep and head to places where we could fit all of the above in.  We used to go to Reimer’s Ranch, the Slab in Kingsland, and several other places. 

The “Slab,” in Kingsland, TX, is a famous off-roading spot in a river bed in Southwest Texas.  We went with some friends of ours, and made a day of the road trip, off roading, swimming, picnicing, and hiking.  We pulled off the raod early that morning and prepared the Jeep to go off road.  We disconnected the sway bars, underinflated the tires, took the top off, attached the tow chains, and applied the sunscreen.  By this point in our Jeep ownership, Katy had become pretty good at helping me navigate obsticles, and even started suggesting places where I could roll over something with my tire and show off my Jeep’s suspension.  We drove through a river that was as deep as the top of our headlights, and then crawled out on to a long, sandy plain.  We stopped to tow another Jeep that had gotten stuck, and they returned the favor when my ego became bigger than my tires.  We made camp at a big outcropping of granite along the river, and hiked up the natural staircase to see the scenery and wildlife.  When we got around to getting in the water, we made a great discovery.  The rocks (after years of water running over them) were as slick as a slip and slide.  You could, carefully, crawl out into the rapids, hold on to a big rock, get positioned, and then let go.  It was like a 50 yards long slip and slide…on steroids!  We took turns going first, and then catching Amber when she would go.  We hiked around the area that afternoon, and then started our trek back to the road to get the Jeep ready for street driving.  Our friends had a 4 wheeler with them.  We learned, thanks to two very zealoud game wardens, that if you SIT on a 4 wheeler that isn’t running, without a helmet, that they will give you a $50 ticket…even if it isn’t running.  I guess every day has to have something like that to remind you of how perfect the rest of the day was.  We made our way back to Lakeway (where we were living), and pulled into our driveway.  We both started to get out (like all kids, Amber was sawing logs in the back.  I still don’t know how she slept in that Jeep), and then we both went, “OWWW!”  It turns out that, as smooth as those rocks were, if you slid 50 or 60 times, you developed a nice collection of little cuts along your backside.  We spent the next 3 days appying ointment to each other’s South sides ever time we were home.  Those times have always been some of our favorite memories.  We lived very simply, then.  We lived in an RV.  And I learned that, when you don’t have a big house to fill, that you start to value doing things over working to buy things.  Katy and I still want a motor home when we are older.  She is not as prepared to live inone fulltime, but we agreed that traveling by motor home is something that we want to do.  We also agree that behind our bio-diesel, solar paneled, LED lighted (for conservation of energy), motorized love nest will be a JEEP wrangler.

Love to all, and don’t forget the dreams that you held dear early in your marriages…

Al

Weekend Update…Happy Easter

I am sorry for the delay in blogging.  I’ve had visitors up for two days, and it was nice to be distracted for a while. 

Katy hasn’t had much change in her condition since Friday.  Her temp on Friday morning was 105.9, but had lowered to to 104 by mid day, and in the 103′s by 2pm.  She has stayed in the 103′s since then, only creeping to 104 for a few hours on Saturday.  The doctors have stopped all antibiotics.  All of Katy’s cultures are returning negative for bacteria/fungus growth.  The doctors say that antibiotics given for one infection may mask the evidence of another one.  So, for now, they have stopped the drugs to see if anything reveals itself. 

There are a lot of things that could be causing Katy’s fever.  The difficult part is determining exactly what that/those factors are.  Is her body having a hard time thermoregulating?  Is there a hidden infection?  Are the meds causing the fever?  Are the antibiotics causing the fever?  Is it due to the fluid in her lung?  Is it from laying down for 7 weeks?  Is it all of the above?  The work done every day, aside from keeping her clean and comfortable, is to try and find out the answer.  They plan on doing wound care on her tomorrow, and also swabbing her sinuses just to make sure that there is no infection there.  The burn team will also meet with the infectious disease doctors to see if they can shed any light on this mystery.

I have received so many e-mails from people offering to help me while I am Dallas.  I want to say “Thank You” to all of you who have written.  I’m sorry that I can’t always reply directly, but I have kept your info, and will call if I canthink of anything.  The hard part about this whole thing is when I am asked what people can do for me, I don’t know what to tell them.  I sometimes feel guilty for not having a prepared answer.  It is so sweet of everyone to offer help.  For now, other than the financial help, just keep saying prayers for Katy.  Also, I REALLY appreciate the peoples’ stories who have gone through this, and the doctors who write me to offer opions.  The different perspectives often give me things to ask the doctors.

I will get back to my usual schedule of writing this week, and I will have more stories to share.  It means so much to me that my Katy means so much to all of you.  She means the world to me.

Love to all,

Al

No news is good news

Al’s sister Betta here. He asked me to update the blog because he is taking the night off. In short, Katy’s fever has come down and she’s been resting comfortably all day. He will update with more details tomorrow night.

MOMality Shirt Fundraiser

Local print design company, Miss DESIGNality, is graciously raising funds for the family by offering a special edition of her “MOMality” t-shirt. This beautiful and insightful message says it all about being a mom. And for this special edition, “Benefitting Katy Hayes” will be included on the sleeve.

For more information, click here.

Thursday….April Fools

Unfortunately this whole thing is not an elaborate April fools joke.  For the first time ever, I haven’t felt like fooling anyone.  Katy has been battling a high fever all day.  I came in to her being at 105.9, and left her at 105.1.  They did a CT scan of her chest and abdomen.  The results won’t be in until later, and the final read won’t be available until tomorrow morning.  They scans were to see if there is any infection causing the fever.  There is a possibility that the spleen is infected where it is damaged.  More of the “wait and see” game.   I just hope she has a peaceful night’s sleep.

I have gotten a few messages from people replying to my comment regarding the strep A issue.  Katy was swabbed for strep A before, during, and after the birth.  She was negative.  Some people have shared their stories, and they all are different.  That is part of what is bothering me.  There doesn’t seem to be a clear path to prevention for these rare cases of the infection.  I met a lady today (I am not including her info for privacy reasons) whose brother died of strep A 5 years ago.  He didn’t have any wounds, he (obviously) had not given birth, he just had flu like symptoms that were treated as such and then went back when his leg started hurting.  He was then diagnosed (after testing), and died a few days later.  I hope that I remembered the facts correctly. If not, (you know who you are) please let me know. 

Today was very frustrating in trying to get communication to happen with the staff.  There seemed to be an altered set of parameters as to when and why anyone would call me.  I was VERY unhappy to walk in to find Katy’s fever so high.  I was even more unhappy with trying to get someone to let me know when she was going to CT.  I addressed it with the case manager and two doctors, and I hope that we will not have any further misunderstandings. 

In the middle of all of this chaos, I want to try and acknowledge some happy things.  Happy birthday Rachel, Bill, Jay, Chris!  I hope you all have a GREAT birthday weekend!

As I was contemplting what to write next, I received a call from the doctor on duty.  Katy’s CT scan of her abdomen showed no infection.  The scan of her lungs did show a little progression of the infection in her lung.  They have started her on some new antibiotics 2 days ago, and adjusted the levels of her meds today.  For now, the plan is to observe and see if improvements are made.  If she continues to get worse, then they will meet with the CVTS team (who did the surgery on her pleural cavity) to get some more opinions.  I have a meeting with the head doctor tomorrow, and have arranged a daily meeting with the new staff every day around lunch time.

I’m sorry not to write a story tonight, but I have been fighting a headache all afternoon.  The computer screen seems to aggravate it.  I will share with you some of Katy’s favorite pop culture items.  These are all things that would be so typical Katy, that I can’t help but to think of her every time I even here these mentioned.

Movies-The Princess Bride, Major Payne, Sound of Music, Serenity

Music-John Denver, The Steeldrivers, Back Door Slam, ANY Celtic music, Storyville

TV-The Daily Show, Colbert Report, and show hunting ghosts

I hope you will think of her every time you see/hear one of these things too.

Love to all,

Al

Wednesday…hump day

Not much has changed today.  Katy was stable, and awake, all day.  She is still running a fever, but it is in the 102-103.5 range now.  Shw was breathing more rapidly, and I talked with the repiratory tech and doctors to find out why.  For now, the concensus seems to be that the trauma of all the treatments, the spleen, and the recent removal of the fluids from her pleural cavity seem to be causing them.  The antibiotics may or may not have any effect on her temperature, as well.  The rapid breathing may also be from pain, and is partially from the ventilator.  It was explained to me that the rhythm of the machine and Katy’s natural rhythm may not be in sync with one another.  The ventilator “breathes” in perfect cadence, while we do not.   For now, we will wait and see how she progresses.  She will have her J line changed tomorrow, and her VACs will be changed on Friday.

Today is the second full day of Katy being aware of her amputations.  She knew before, but, due to medication, would have to be reminded the following day.  I’m sure the neds play some part in her amnesia, but I also feel that part of it is Katy’s defense mechanism from the pain of knowing about the loss of her limbs.  She is taking it well, and I talked with her about the possibility of biomechanical prosthetics.  The doctors have incresed her protein in anticipation of her starting PT.  I am actively hunting for an accute care facility in Houston that will take Katy.  My friend’s father in law is on the board at Methodist, so we are trying to see if any doors will open there.  The problem is that if Katy receives one day of accute care in Dallas, Medicaid won’t allow her to transfer to Houston.  It doesn’t matter if the hospital is better, if that’s where she lives, family, etc….its one hospital, and one hospital only.  Trying to time this will be tricky.  The case manager will be very important once I get a contact name at the hospital that I would like for Katy to go to.

Katy’s lower abdominal wound is healing well.  Once the dead tissue was removed, part of her intestines are exposed.  The VACs are helping her body to rebuild the missing tissue.  She will have to have 2 skin grafts (that we know of), but those should heal in under a week once they are performed. 

The news stories are traveling around the country.  The story that ran in Dallas was seen in Dallas, Houston, East Texas, Michigan, and was on the MSNBC website.  Hopefully, by spreading the word about this infection, we can help prevent it from affecting someone else.  I have received some conflicting information on this infection, and I’m trying to make sense of it all.  Most of the doctors have told me that this infection is rare, and all but extinct in the USA, but the CDC says that it is on the rise, and has been since 1987.  Some people that have e-mailed me told me that, since hearing our story, have asked their doctors about this.  In a lot of cases, the doctors had given the women antibiotics (without telling them) to prevent this.  When Arielle was born, we HAD to submit cord blood because the state of Texas requires it.  If this is on the rise, then why weren’t we at least told about the possible need for antibiotics?  The majority of cases seem to come from C-sections in hospitals, and most of the remainder come from births that occur in places such as outdoors, cars, etc (assuming I can trust the AMA web site).  I’m not sure what I am looking for here, but it is bothering me that the American OB/GYN, AMA, CDC, Texas Health Dept, and US Health Dept can’t seem to have similar facts on their websites.  It is a concern to me because (even with our views on “modern” medicine), we would have done the antibiotics had we known.  As far as I can tell, Katy was not given any when Jake was born 6 years ago.  Just something that has been running through my mind….

In response to the many e-mails I am getting worried about me taking care of myself, thanks.  I will tell you that I am eating, trying to sleep, and getting a little exercise.  I have been visiting the local driving range for an hour a day.  It is inexpensive, and is really nice to get out in the sun for a while.  My golf swing is so bad that horible golfers say, “that guy sucks!”  Still, it is therapeutic to go and hit something every once in a while.  Several people have also been asking about how I “feel” during this ordeal.  I am holding up.  I’m sure that once we are back in Houston, and I have had time to process this, I will have several emotions to deal with, but for now I am hanging in there.

When Katy and I were still friends, we decided to go out one night and check out Storyville at Dessau Music Hall.  Storyville was an all star Austin blues band, and had members from the Arc Angels and Double Trouble.  George Devore and the Roam, and Beth Black opened the show.  It was an incredible show.  The atmosphere was perfect for the music, and we talked all night over some beers.  Through our friendship we had talked about everything under the sun.  I know that I really looked forward to our time together, and was probably doing a bad job of hiding the fact that I really liked Katy.  During Storyville’s set, they played the song “Who’s Left Standing.”  I couldn’t take it anymore.  I pulled Katy out on to the dance floor and we danced to the song.  For the first time I held her close to me.  I remember us both shaking as we realised that something was happening between us.  We would pull apart and look at each other, and then we dance close again.  The song became one of the first songs to be “ours.”  Its meaning to us wouldn’t be understood by anyone not there that night, but know that it still puts back on that hardwood dance floor holding her every time I hear it.  So much was happening to the both of us in our lives, yet this song made it all seem conquerable.  I am sure that it was at that moment that we both gave into the love we were feeling.  So when we renew our vows in 2012 don’t be surprised if you hear that song playing.

Love to all,

Al

News story…March 30th

http://www.39online.com/news/local/kiah-new-mom-fights-for-life-story,0,1502053.story

Tuesday…more hurry up and wait

Katy was supposed to be in the OR early this morning, but she got rescheduled for later in the morning.  She went in around 10:30am, and I saw her again at 1:30pm.  The surgeries usually only take an hour to two hours, but they use the opportunity to clean the bed, clean her linens, etc.  I’m sure it is much easier to do when there isn’t someone lying in the bed!

Katy had her leg wounds, and her abdominal wounds, cleaned today.  The right leg will need two small skin grafts, the left leg looks ok, the left arm looks good, and the right arm is close behind the left one.  The righht arm has a little catching up to do due to some infection they romoved last week, but the packing they are using seems to be helping the arm heal.  Her scar from the stomach surgery is healing as expected, and (if she passes an SBT, and a “water seal test-I hope I have that correct) they will extubate her, and remove one of the chest tubes, tomorrow.  Also, as long as she can be safely medicated for pain, they shouldn’t need to take her to the OR for VAC changes anymore.  Only if the level of meds needed for her to not feel it start to affect her breathing will they do wound care in the OR again.

Her lower abdominal wound, from the original hysterectomy surgery, will need the VAC for a while longer.  Preliminary estimate (I stress estimate) is another month.  The wound was deep enough that she had no tissue above her intestine, leaving it exposed.  She is starting to repair in the area, and the VAC seems to be helping.  It will not prevent her from starting PT, though.  Her spleen is still in the process of correcting for the damaged area, but that will take care of itself with time. 

Her culures continue to come back negative.  That is a very good thing.  Hopefully, the fluid being removed from her pleural area, and the spleen will explain her fevers, and, hopefully, the fevers will start to reduce.  They did a sonogram of her heart, yesterday, to make sure that no infection has set into her heart valves.  The sonogram didn’t reveal any infection in her heart. 

Katy was in a good mood, and enjoyed listening to music and hearing me read her horoscope and the news.  It still lights the room when she smiles. 

While we were in Cozumel, we did a LOT of snorkeling.  We swam with grouper, tuna, seagent majors, eels, and even saw a native dive down and bring up a sea tortoise.  We snorkeled 3 reefs, including Palancar, the world’s second largest barrier reef.  We sailed all day on the ZoroII, which was a giant catamaran.  We set sail early in the morning, hit the 3 reefs, ate lunch at a resort on another island, and then came back that evening.  Katy and I got to the dock where the boat picked us up way too early.  As we sat waiting, we watched 2 pelicans fishing very close to the dock.  The female pelican got chased off of the lone tree trunk sticking out of the water.  She settled on the dock not too far from where we were.  Katy and I, both being bird lovers, were amazed at the beauty of this large, and ancient looking, bird.  We slowly moved closer, allowing the pelican to get comfortable with us.  And, after a half hour of trust building, Katy took a picture of me sitting next to a wild pelican.  It is one of our favorite memories.  We both love to see animals in the wild, and were honored that this beautiful lady let us get close to her.  She was so relaxed by the time we took the picture, that she was preening herself with me only a few feet away.  After this amazing start to our day, we set sail for the 3 reefs.  The day was beautiful.  The breeze was calm and cool, and the water was transparent blue.  According to the depth meter of one of the guides, we were able to see 100 feet down.  I’m not sure what kind of fish I saw when I snorkeled out over a fire coral cliff at Palancar, but it was swimming very deep, and made the 7′ grouper look TINY!  Katy and I quickly made for shallower water!  We applied sunscreen all day, but were not prepared for what we discivered the next morning.  When you are snorkeling, your body sticks out of the water in a particular way.  For Katy, this meant a PERFECT circle sunburn from her lower back to upper thighs.  You could not draw a more perfect circle with a protractor.  Katy has fair skin, and always gets mad at me because I turn brown, and she turns red, and then freckles.  Sitting down was tough for her for a few days, but got her the strongest sunscreen they sold, and continued to explore Cozumel, Plaa Del Carmen, Xel-Ha, Tulum, and several other sites.  I talked with her about our trip to Cozumel, today.  We both smiled thinking about how much fun it will be to go back with all 3 of our kids.

Love to all,

Al

Monday..Surgery and one more tomorrow.

Katy went in to the OR early this morning, and was back in her room by 10:30.  The procedure seemed to go well, but the next few days will reveal how well.  Her chest tubes are draining nicely, and there doesn’t seem to be any active bleeding.  She was awake for some of the visits, but usually let me know she was tired, kissed me, and then fell asleep.  They are giving her fentonel (spelling?) and Neurotin (spelling?) for her pains.  Katy had a different level of amnesia, today.  She remembered Kayla and Ken visiting, and remembered that the kids went to the zoo yesterday, but didn’t remember that she was in Dallas or why.  I think that indicates that she is selectively remembering certain items.  She may not be ready to face the medical side of things just yet.

She is scheduled to be first in to the OR tomorrow, and then the doctors will observe her for the next few days.  They will be looking at her blood gas levels, and seeing if her body responds positively to the treatments.  If all goes well, they may remove one of the chest tubes as early as Wednesday.  I have asked that they delay putting in the trachiostomy for now.  We discussed the benefits vs. risks, and I feel that I would like to wait and see if any other complication arises.  If none do, then the trachiostomy shouldn’t be needed. 

I want to say “thanks” to Jen, Britt, Megan, Kelly,Sarah, Betta, Pat, Lucille, Tina, Ike, and all of the others who have given so selflessy to help our family.  These folks have done so much, and I will be forever grateful.  I also want to thank Crystal, Bonnie, Danielle, Robbie, Arnie, Allen, Jenifer, Trina, Theresa, Zane, and all of the other nurses who have given Katy such wonderful care.  Aside from the care they give to Katy, I get to see them with several of the other patients.  Their empathy, kindness, and love are all indicators that these are a special breed of people.  We are lucky to have them in this ICU.

While Katy and I were still in Cozumel, we rented a jeep for a day of exploring the island.  We went to the center of the island and saw ancient ruins that were a thousand years old.  We (being repltile and bird owners) loved seeing all of the iguanas that were EVERYWHERE.  Some were 5 feet long!  We walked through the jungle, saw ancient religious sites, pyramids, temples, houses, and the entrances to underground waterways.  Then we went to the Southeast side of the island and ate lunch.  For those of you who don’t know, Cozumel’s West side is all white sand, calm waves, and not very many sharks.  The East side is rough surf, jagged rocks (Katy got her “honeymoon scar” on her ankle on those rocks), and sharks.  On the Southeastern curve of the island there are several little restaraunts and bars.  We stopped to eat at one that was literally a small kitchen, a plywood roof (maybe 4′ x12′), and a portable restroom.  The tables were in the sand, and ours actually had the water running over our feet while we ate.  This place was RIGHT on the water.  We ate 2 flounder, 2 lobsters, 12 shrimp, octopus, squid, and several other fish, plus a few Coronas, all for around $15!  The neat thing was that the owner’s family had caught all of the fish that morning.  It is hard to beat fresh seafood!  We ended up finding a secluded beach, off of one of the jungle roads, and we took a nap in the shade of the jeep and a lone palm tree.  Then we went looking for more of the local culture.

Our adventure continued to the Northern tip of the island….at least that’s where we intended to end up.  There is a road that crosses the middle of the island, and most of what is North of that is jungle.  There is a trail (4×4 required) to an ancient Mayan lighthouse, that runs throught the jungle.  We lowered the top on the jeep and started making our way through the palm fronds that were coming in to the jeep.  The path was very narrow.  After a few minutes, we were almost ran into by a caravan of jeeps traveling very quickly in the opposite direction of us.  We would soon find out why.  Every evening a small storm would hit the island.  It was usually very pleasant, with lots of rumbling thunder, and a brilliant lighning show, but what was coming at us was a full on storm.  About 10 minutes after the near collision with the other jeeps, the sky had gone from sunny to dark grey.  5 minutes later it was BLACK.  We scrambled to get the top back on the jeep, and finished just before the winds picked up, and the horizontal rain started.  The trail was too narrow to turn around, so we decided to try and move forward to look for a place to turn.  I knew from my off-raoding days, that we did not want to stay still and let the water collect in the loose sand under our tires.  We drove (at about a mile an hour) throught the thick jungle and pouring rain for another 1/2 hour.  We finally came to what looked like an opening big enough for us to turn around, and in that opening were 6 men in olive drab uniforms carrying machine guns!  We were startled for a second, but they just smiled and waved us to turn around.  We even asked if they needed a ride.  We knew there wasd the military base near by, and we thought they may have gotten stuck, too.  They said that they were fine, and we went back towards the main road.  Later, we found out that those guys are part of the force that protects the tortoise eggs from people stealing them.  We never did get to see the lighthouse.

Love to all,

Al

Sunday…sweet calm

Sundays are unlike any other day in the BICU.  The parking garage is almost empty.  The ICU waiting room is empty except for those hours between 2 and when it is easier for people to visit.  The halls are less congested, and the downstairs is almost abandoned.  Thanks to the sunny weather, all of this was a welcome change as I roamed the halls thinking about Katy.

Our friends Ken and Kayla visited, today.  It was so nice to see theor smiling faces, and even better to see the smile on Katy’s face when she saw them!  Katy was awake for their visits, and was in great spirits.  I got to show Ken and Kayla the market diner, which is a jewel in the Dallas eatery scene.  A 1950′s greasy spoon, with a colorful staff who always asks about Katy.  If you are ever in Dallas, it is a must eat experience.

Katy’s numbers looked stable all day.  Her white blood count lowered again, and her H&H levels stayed stable.  The drain in her pleural cavity, however, is not getting the job done.  After meeting with doctor Lee, I consented to Katy having a surgery tomorrow morning to remove the fluid from the pleural cavity around her right lung.  Most of yo know that I usually try anything to avoid surgery, but in this case I asked for it as opposed to trying different methods.  It is the most likely to remove the fluid, and therefore lower the risk of infection. They will replace the one breathing tube with 2 (one for each lung), close off the tube to the right lung (causing the lung to shrink), and then flush the area clean.  Afterwards, they will fill the area with saline, and then allow it to drain out of 2 tubes.  I hope I have all of the information correct, but I am sure someone will correct me if I don’t.  It appears that several Parkland staff read the blog, so correct me if I have my fact mixed up, please. She will go in to surgery at 7am, and I should be able to see her around 11am. 

Katy is still scheduled to have a procedure done on Tuesday to look at her abdominal and leg wounds.  Though this is called a surgery, it is more like advanced wound care..if I understand it correctly.  They will remove the VACs, check, and clean, the wounds, and then re-pack the VACs.  Hopefully, these procedures will keep Katy on the path towards revovery, and we can (after her recovery from these procedures) start to make plans for PT.

I though quite a bit about which story to share with you all.  Some stories are just for the knowledge of those that were there!  After some deliberation, this is the one that came to my mind the most today.  Katy, Chris, and I were in Surfside Beach, TX, during one of my Summer band camps.  It was the weekend, and none of my students were there.  The adults were having some fun, and, after a few coctails, decided to go and float in the shallow surf.  Before anyone gets too upity about drinking and swimming, very shallow surf, and we only had a couple of drinks (that was for my mom).  We were floating, and watching the stars, and talking.  It was very pleasant.  The next morning, a local fisherman informed us that at the time of evening when we were floating, was when a certain breed of shark comes close to shore to feed!  After hearing that, we decided our next sea faring adventure would ve during the daytime hours.  We headed out the next afternoon for some fun in the sun.  We made sand castles, swam out to the dunes, splashed, threw sand balls at each other…good beach fun.  We waded out to the first dune, and then waded to the 2nd.  The 2nd dune was close than usual due to the tide.  The three of us were standing in chest deep water enjoying watching the pelicans fish about 100 feet in front of us, when we saw a group of fins rise up, and then lower, into the water.  The pattern looked like dolphins.  Katy said, “are those sharks?”  We watched, and decided that they couldn’t be sharks.  There were 6 of these fins rising and lowering in a pattern that looked like the porpoises the swim along the boats in the channel.  Then, all of a sudden, a HUGE shark jumps out of that water with a large fish thrashing in its mouth!  We then decided that it was time to back slowly to the shore.  We backed out, amazed at what we had seen, and how close it was.  We learned a valuable lesson that day…wherever the birds are fishing, so are the sharks.  It was one of many adventures that we have had in Surfside.  None of those adventures would have happened if it weren’t for our very dear friends, the Weasters.  Mike, Melissa, Paige,  Taylor, and Connie have shown incredible support for mine and Mike’s band camp visions, and have been friends above and beyond the call of duty.  Katy and I always love our excursions down to Castaways Bar and Grill (owned by the Weasters, and home of the Connie Quervo Special – buy a shot of Cuervo, get a free lime wedge).  Whether for the camps, or just a weekend away, Surfside is filled with great people, and a wonderfully relaxed atmosphere.  I highly suggest a trip down there if you want to do nothing but enjoy the sun, a few drinks, some good food, and maybe a stay at one of the local beach houses.  It is our weekend Cozumel.

Love to all,

Al

Saturday

Ah the weekend…I think.  The days are so blended that the only way I know that anything is different is that the parking garage doesn’t fill up on the weekends.  It was, however, a beautiful, sunny day in Dallas, and there were very high wind gusts.  From Katy’s window, though, it was a gorgeous, sunny day.  I know that she enjoyed looking out her window today.

Katy’s overall condition hasn’t changed much.  Her temp came down to the 102-104 range, and she was awake most of the day.  The nurse called me in the middle of the night due to Katy’s chest tube clotting and being restricted by the clots.  The doctors put an anti-coagulant in the peural area to unclog the drain tube, and it seems to have worked…maybe too well.  Katy went from draining 150cc in 14 hours to 400cc in about an hour.  That is great for the fluid in the area, but it did make her blood pressure drop.  The doctor thinks that the blood pressure dropped due to the lung expanding rapidly.  They put a clamp on the drain tube to let her blood pressure regulate, and then they slowly allowed it to drain by removing the clamp in small bursts.  I’m not sure if this will remove the need for her to have surgery on the area.  I hope it does, but if surgery is the only way to be sure she won’t get infection, then I am for it.

So far Katy’s cultures have been negative on any growth.  That is a really good thing!  I can’t waint until words like “cultures,” “growths,” “lasiks,” and “procedures” are no longer a part of our daily vocabulary.  As far as I know, she is still scheduled to have her wounds examined and cleaned on eaither Monday or Tuesday.

Story time!  I’m sorry that I have been too tired to write much, or very well, the last few days.  For some reason the events of the last few days took an unusually high toll on me mentally and emotionally. I thought I would share a couple of stories from our honeymoon.  We took our honeymoon in Cozumel, and we loved it.  We always have talked about wanting to take the kids back there.  On one day trip, we rented a scooter, and decided to explore a couple of sites and Cozumel City.  I had ridden a scooter as a main mode of transportation while I lived in Chicago, but Katy had never been on one.  It is way different than a motorcycle.  The wheels are much smaller and very close together.  She got used to how to ride a scooter, and we took off for our day.  Our first stop was Chakannab.  This was a park next to our resort.  The main attraction (to most people) was the snorkeling.  It has a small beach, with several ladders leading to the water.  The beach is more of a sea wall lined with a rocky ledge, thus the reason for the ladders.  Every 50 feet or so, there are wooden buckets hanging on poles.  The buckets are filled with vinegar.  We go snorkeling in the crystal-clear water and see all kinds of fish, coral, tortoises, and eels.  It was gorgeous!  I got the idea that I would dive down (about 12-14 feet) and see what lived under the rocky ledge.  I dove down, and as I turned my head to look, I came face-to-face with a 7-8 foot long grouper.  It was an amazing experience.  This fish looked prehistoric.  It’s large mouth slowly moved open and closed.  Katy was watching from the surface.  I signaled for her to come down and look while I went up for air.  She did, and when she looked under the rock…she screamed under water and high tailed it to the surface!  She was saying “oh my god” repeatedly.  That fish scared her pretty good.  We were swimming for a while longer, and seeing all kinds of great sea life, when we started feeling little pains.  They were similar to ant bites, and they were randomly occuring, but starting to be more often.  We started swimming back to where we got in to the water (Katy trying to avoid the “massage therapist eating” giant grouper), and got out.  It turns out that the stings were from jellyfish barbs floating in the water.  Whenever a school of jelly fish comes in, the barbs float around and hit the water at the park.  The buckets of vinegar help the stings not to hurt, but do make you smell funny when you spend the rest of the day in the sun!

That evening, we decided to eat at a local restaraunt.  We were searching for where to eat, when we were struck with the knowledge that we had found THE place.  The barker (guy trying to get people to eat there) was in a 1970′s brown, polyester, wide lapeled, bell bottom suit.  His shirt was neon lime green, and his hair stood a solid 9 inches from his head in the tightest perm I have ever seen.  He had a handlebar mustache that was waxed into submission, and gold teeth lined his smile.  How could we go wrong?  The decision was a good one.  The meal was exquisite, and the owner (hearing it was our honeymoon) made us a special dessert of flaming triple sec, coconut ice cream, clocolate, fruit, and several liqueurs.  YUM!  Katy and I have always loved flamenco guitar, mariachi, etc, and have always loved the song “Besame Mucho.”  I asked the mariachi to sing it.  I took Katy’s hand, looked into her eyes, and was lost in her loving gaze until I heard..”Kiss me much.  Darling kiss me much.”  The mariachi was translating (literally) the song into English.  He figured we wanted it that way because we were Gringos.  I kept asking his to sing it in Spanish, but he was convinced he was doing a good job.  We laughed it off, and I eventually found a mariachi to song it in Spanish.  If you are ever inKingwood, and eat at El Ranchero, as the singers to sing it for you.  It is mine and Katy’s favorite version.

After dinner, and a little stroll, we hopped on the scooter for the harrowing ride back to the resort.  Two of us, the merchandise we had procurred, full bellies, on a scooter, in the dark, dodging crabs the size of dogs, and trying to beat a storm back to the resort….it was amazing!  So, Mom, when you play with your marble domino set, know that we had to balance that in between us as we rode because it was too heavy for the bag it came in. 

Love to all,

Al

Friday…one step forward, and one step back

I will apologize, in advance, for this being a short blog.  I am feeling very tired, and not sure if my typing would be coherent if I write too long.  Here is a link to a news story that NBC 5 did.

http://www.nbcdfw.com/news/health/Rare-Form-of-Common-Infection-Ravages-Texas-Mom-89242927.html

Katy was resting this morning.  We had a nice visit, and she seemed in a good mood.  As is the case after they medicate her, she was confused about where she is, etc.  They took her to the OR, and debrieded the stomach wound and legs.  Everything seems to be healing, so they are leaving them as they are so that they may heal from the inside out.  Her fever is down a little bit, but she is still 104-105 degrees.  We are just keeping an eye on her white blood counts to see if they continue to drop.

The drain tube that they put in her chest to drain the blood from around her lung is not draining enough.  The fluid is too thick.  They took out the smaller diameter tube, and put one in that is about as big around as my finger.  If the tube does not help the fluid to drain, then they will perfrom surgery next week.  She is also scheduled to go in for another procedure to follow up on her stomach and leg wounds.

Again, sorry it was so short, tonight.  I will write more when I can.

Love to all,

AL

Thursday..Afternoon update

I just finished an interview with NBC Channel 5 in Dallas.  Omar Villafranca (reporter) and Robert (cameraman) were both very nice, and the story will air at 10pm on KXAS-TV.  I’m sure there will be a video on their website sometime after it airs.  Omar told me about a program at OSU where students design prosthetics.  Maybe this will be a lead to something.  We will see.  [Read the Article.]

I had a meeting with Dr. Purdue about the plans for Katy this week.  He gave me some good insight into what has been happening.  Her fever and white blood count have come down a little bit, and one of the causes seems to be some trauma to her spleen.  He feels that the spleen will recover, though it will have a 20-25% loss.  This is not a big deal, except for the fever.  Since her counts seem to be doing better, she should start to regulate.  She is still scheduled to go to the OR tomorrow for debriedment and wound care of her stomach, and to look at her legs. 

Katy has a small hernia in her abdomen from the surgeries, but that will be able to be repaired later.  They will also be moving her to a smaller bed tomorrow.  The current bed may be designed for someone heavier than her, so it isn’t as soft as they would like.  She has a couple of pressure ulcers on the back of her head and her bottom.  Those will be treated, and the softer bed may help to prevent these from getting worse or more appearing.

Story time.  As I was talking to my friend Susie yesterday, something occured to me.  One of the reasons that I am so insistent on being there for the preliminary psych evaluations is that Katy and we have lead unorthodox lives.  I told the case/social workers this story, and they understood where I was coming from. Some of you may not know that Katy used to work on movie sets.  Her and her then boyfriend Hans (I hope I spelled it correctly) travelled the country in a VW van working on movie sets.  She worked on Rambling Rose (which is where the vanity in our home’s entry way came from), and used to dress one of the Teenage Mutant Ninja Turtles!  We have some pictures from the set, and Katy has a few stories from those days.  One of the things that I am always proud of is that Katy and I have chosen to follow our passions.  She is has a passion for healing people, and I know it shows in her massage.  It is too easy to just call her a massage therapist.  She is so much more than that, and THAT level of passion is one of the things I first fell in love with.

Thanks to the mother’s group of Dallas, again.  The dinners I have received are amazing.  The only problem will be to try and tolerate my own cooking when this is all done!

Please say a prayer for Dr. Purdue.  He is going in for a hernia surgery next week.  I know it’s not a big procedure, but as someone who has had 2 hernias, I don’t envy him.  I admire him, and am grateful for the care he has given Katy.  I hope he has a smooth procedure, and a fast recovery.

Love to all,

Al

Thursday…mid-day update

Katy had a high fever of 106-107 all night.  They have given her motrin/ibuprofen and surrounded her with ice packs.  Her fever came down to 105 at around 11am.  She is scheduled to go to IR to have the IVC filters put in to prevent the clots from moving.  Other than that, we are waiting for the fever to drop and for the culture results to be returned.

Keep your fingers crossed.

Love to all,

Al

http://www.click2houston.com/video/22947268/index.html  

Here is a link to  a news story that aired on channel 2. 

Today was an “exciting” day for all the wrong reasons.  The day started with me walking in to the 8am visit to discover Katy wearing a breathing mask again.  At some point in the early morning, Katy’s breathing deteriorated.  Her fever went up, and she was moving in a way that I know to be how she deals with discomfort.  The doctors ordered a CT scan of her upper torso and abdomen.  The result of the CT scan of the lungs was that she had a collapsed lung due to pleural effusion.  She had fluid in between her right lung and her long wall (if I understand it correctly).  The result of the lower CT was that she has clots in the arteries of both thighs.  They will put in filters to catch the clots so that they don’t break free and move to the lungs.  For the fluid, the first thing was to identify what it was.  They called Interventional Radiology to insert a tube into Katy’s ribcage and into the area with the fluid.  The possibilities were blood, protein, or puss.  Each one carried a different set of causes and effects.  In this case it was blood.  The blood appears not to be fresh, which indicates that she is probably not still bleeding.

The results of the cultures will take a day or two, and we are not sure if the blood was the cause of her breathing problems.  One possibility is simply that she is worn out.  The doctor compared it to treading water for several days…eventually you would tire.  Katy was resting well when I left her, but I hope that we are able to find more answers over the next day or two.  I’m not sure what this setback does to the timeline for her returning to the OR to close wounds, but I will blog that info as I find out.

The second biggest challenge of the day was trying to get the PT and PSych staff to understand why I am insisting on qualifying all people who come in contact with Katy.  Basically, I told the therapist that if Katy become lucid during therapy, and asked about her arms/legs, would she be qualified to handle that situation?  That being said, Jen and Karen are both very nice, and I’m sure very qualified.  I feel certain that they will both do a great job in Katy’s rehab.  I also spent some of the day explaining my stance to the social worker and case manager.  I think we have all come to an underatnding.  The staff at Parkland has been great.  They are very good at what they do, and I am glad that Katy is here.  I still plan on being a huge pain in the butt to all new people dealing with Katy.  As I explained today, all medical staff carries the baggage of all the bad experiences Katy and I have had with doctors prior to meeting this group.  Once I meet (and feel comfortable with) them, then I am much more comfortable. 

I had planned on writing a much longer blog, that included some stories, but I am exhausted.  Today has drained me, and I need to rest for tomorrow.  I will write more soon.

Love to all,

Al

Tuesday…I think

The days all seem to blend together.  I get a daily horoscope on my phone.  Yesterday I looked at it 3 times and got mad.  I thought it was repeating itself!  Then I looked at the date…same day.  At least today was a beautiful, sunny day.

Katy was awake, talking, and stable during all of my visits.  She would get tired, but was awake and interactive with the nurse and I most of the day.  Usually by the end of a visit she would tell me she was tired, and I would set her up to rest.  They have stopped all IV pain/sedative drips, and are only going to give her doses as she feels pain.  She says that she isn;t hurting, and actually tried to get up and leave a few times.  I explained to her that she had a bit more healing to do, but that our goal was for her to go home as soon as she could.

Part of the side effect of the drugs, lack of sleep, hunger, fever, intubation, and brain dealing with trauma are some altered reality sequences.  For example, she will sporadically remember that she is in Dallas, and then (5 miutes later) think she is at home.  On one visit, Katy told me that the speech therapist had come and fed her.  I was excited because I knew they were planning on doing this, and I asked her what she ate. “It was great,” she said “I had rib meat, potatoes, green beans….really yummy.”  I asked the nurse about it (away from the room), she said the speech therapist had come.  I asked her what they fed her, and she told me “2 tablesppons of applesauce.”  I smiled.  Some of Katy’s “visions” are not very nice, and I am sure these are her brain’s way of explaining the trauma, but I didn’t mind her imagining a nice experience.  She also told me to get her purse (a nearby pillow), because she wanted to give me money so that I could go get a drink (alcaholic).  She said I looked like I needed one.  Just like Katy, always thinking of others.

To clarify an earlier statement, I do require that the psych team meets with me first, but, once I have met them, I am OK with them treating her when I am not there.  I thin that they will be key in her emotional recovery, but since they don’t KNOW her, I want to clue them in.  I hope that they will be available tomorrow for me to meet with them.  Also, occupational therapy did an analysis of Katy, today.  I hope to find out their results tomorrow.

I want to say a special thanks to one of the coolest people I have ever know, my brother-in-law, Thom.  Aside from being a really great husband to my sister, being really funny, and always being up for playing games at our family get togethers, he set up the blog, and helped me to learn how to e-mail some music files to my business partners.  Thom has always made himself available to me (even before this event), and the blog was a great idea on his part.  Thanks, Thom!

I will write more tomorrow.

Love to all,

Al

“Try not to become a man of success, but rather a man of value.”  Albert Einstein

Monday..surgery

Katy went in to the OR at around 9:30am, and I was able to see her at around 3pm.  Dr. Purdue filled me in on the operation, and what they did today.  They were able to close her arm wounds, pull the VAC off of her hip, put VACs on both legs, remove some dead tissue from the original surgical wound on her abdomen, and put a VAC on that wound.  She was extubated in the recovery room, and was smiling at me as soon as I got in to the room.  She was very tired, and sawing logs all afternoon.  It seems to be a lot less of the drugs, and a lot more of her actually resting.  Audra (cool nurse), lowered her versed level to 1, and her fentonal is staying at 50.  The NG tube was also removed.  They plan on returning to the OR maybe Friday to do further wound care and possible closures.  All of these are good things!

I’m sorry that I don’t get to respond to all of the e-mails/messages/comments that I get, but I do read them all.  One that I received yesterday was from a woman who had been in the hospital for several weeks.  She, too, had fever the entire time.  She said that once she was moving, the fever went away.  It is so nice to hear all of the stories that people send me who have experienced similar things as Katy. 

I want to thank my friend/business partner, Mike, for bringing up my recording equipment so that I could do some recording while watching My Name is Earle in Spanish.  I also want to thank Karen, or Karen’s mother, for sending me the copies of Turbotax that I needed.  THANKS!  That will help, not only with SSA, but with my plans to do some online classes. 

The Psych doctors are starting to come around and inquire about Katy.  Some people may or may not understand this, but I have extressed that I do not want them to even see her until they meet with me.  It is, in my opinion, important that all aspects of her care run through me.  I believe strongly that they should be a major part of her care, but not without me being there and qualifying them.  I know Katy, and her distrust of conventional medicine.  I don’t think that she will be receptive unless I am able to introduce her to the process.  Since they have not seen her yet, I don’t think that they will have the tolls they need to do a good job without interviewing me.  I will keep everyone up to date with her mental state as she becomes more lucid. 

Story time, again.  Katy and I were still living in Austin, and, on a weekend alone, decided to go play paintball.  I had played a few times, but she hadn’t.  We were suiting up, and practicing with our guns, when this small group of wanna-be gangsta thugs came up talking about how they were going to “cap all these b$tches,” and “be all like Scarface and $%#@.”  During the first game, these 3 “tough gangstas” (after getting hit once each) were all hiding behind a plywood wall, and whining about not wanting to get hit.  It was HILARIOUS!  These guys weighed 250-300 pounds each, and were all trying to squeeze together behind a 4′ x4′ piece of plywood.  Unfortunately, they were on our team.  Katy looked at them with disgust, and then, my beautiful, sweet, Katy, said “cover me,” and did a somersault on the rocks before running through the flying paintballs to a closer bunker.  She ended up taking out 3 of the other teams guys before getting hit.  I was SO proud!  We played about 10 games that day, and both of us came home bloody and bruised, but laughing.  I was always so impressed by her willingness to just jump in and get dirty with the boys.  It is one of my favorite things about her.

I will write more tomorrow.  Have a great week!

Love to all,

Al

Sunday Sunday Sunday

It took me 30 minutes to dig my car out of the SNOW this morning!  That was “fun.” After freezing my fingers, and getting covered in snow, I went to see Katy.  She was awake, and in good spirits, all day.  She is on reduced levels of meds, but still gets amnesia from when the medicate her for wound care and dressing changes.  She did a little talking, listened to John Denver, and enjoyed looking out the window.  It was good to see her smiling a little.

At one point, Katy did complain of pain in her ankles.  I asked her if anything else hurt, but she said the only thing that hurt were her ankles and that they “burned.”  I conveyed that to the doctor, and he explained the medicine that they are giving her isn’t like the opiates, it takes a few days to build up in her system. Though it doesn’t seem so, this is really a good thing.  It means she is lucid enough to distinguish different pains.  This will help the doctors treat specific items as opposed to an overall pain med/sedative.  She is still experienceing an altered state of reality due to the drugs, the breathing tube, the fever, etc.  All of these are normal for what she is going through.  The doctor is also getting me in touch with the counselor/psychiatrist to help Katy with all of what has happened as she becomes more aware.

Katy is scheduled to be 2nd in the OR, tomorrow.  The time can varry, but is usually around 11am.  I will be at the hospital all day (I always am when she is having any procedures done), and I will blog again tomorrow.  Until then…sleep.

Love to all,

Al

Weekend Update

I’m sorry to not have written sooner, but I made the trek to Houston for Jake’s birthday party.  It was so nice to see him playing and having fun! Thank you to EVERYONE who showed up.  It was great to see some faces I haven’t seen in a while, meet some new ones, and to watch the children laugh and smile.  A special thanks to Flower Pot Annie.  She is an awesome clown that is donating her services to all of our events.  Katy and I also had a great slew of visitors.  Thanks to Susie, Nathan, Bernie, Lucille, Amber, Jay, Beth, and Kat for coming to visit me while they were in town. 

There is not a lot of news to report since my last blog.  Katy is still stable, and her fever continues to pop up.  She stays feveral (spelling?) most days.  The cultures continue to come up negative, but the doctors have speculated that it may be her body trying to thermoregulate.  She is still (last I heard) to have another surgery on Monday.  I hope that this time the doctors find Katy to be in a situation where they can close at least some of her wounds.  I do not want them to do anything prematurely…but I hope that Katy’s body is in the condition for this to occur.  I also hope that we can definatively determine the cause of her fevers soon.  The fevers do elevate her breathing, heartrate, and blood pressure a bit, and I would love to see her levels come down.  It will all happen in time.

I know that many of you have sent me messages expressing deep sorrow over the loss of Katy’s limbs.  I too am sad for her.  That being said, I am reminded that the whole is greater than the sum of its parts.  This, too, is true with Katy.  Her hands were magic.  Her incredible ability to massage, relax, and heal was special to her.  I had a special love for her feet (nothing kinky ).  I thought she had the most beautiful feet, and we used to trade foot rubs regularly.  Katy is so much more than those things, though.  A lot of us know her as a result of her massage, but her mind for oils, herbs, nutrition, and other naturopathic methods is amazing.  She has, against all of my best efforts, managed to keep me out of the hospital for 11 years.  I know that she will be on me to take care of myself as soon as she wakes up!

Stry time!  Katy and I got married on July 31st, 1999.  In the middle of planning our wedding and honeymoon, we were inundated by all of the Y2K buzz.  We got married in Georgetown, TX….the same town where we had spent that day on the bus the year before.  We got married in a little white chapel on the square that had been built in the 1800′s.  Our reception was held at the park near the river.  Our families and friends helped decorate, and my friends’ band provided live entertainment.  After the reception, Katy and I returned to the RV we were living in and drank Earle Grey tea.  That night of finally being married and ALONE was so special in our memory that we still keep Ealre Grey tea on hand in our tea cabinet.

I got to thinking today.  When we got married, everyone was worried about the end of the world.  I have decided to renew our vows on July 31, 2012.  Since the world is supposed to end again, I figure I will let the universe know (again) who I plan on spending eternity with.  Consider yourselves (ALL of you) invited to the event.  When we were married, our vows said “until the end of time.”  I plan on holding her to that!  Have a great rest of the weekend.

  Don’t forget to let those around you know how much they mean to you.  It’s OK (I’m talking to the guys here) to let your friends know you love them.  I know that it is sometimes hard for guys to tell each other, but you will regret it if you don’t.  That being said, I love you, Chris and Betta.  Thank you both for being my compass.  Without you two I would be lost.

Love to all,

Al

Please humor me.

I heard this song today, and it made me smile.  This very much represents how I feel about everything right now.  You won’t understand until the end of the song, but please listen carefully to all the words. ENJOY!

http://www.youtube.com/watch?v=-KUczoEoqqQ

Thursday update

Katy continued to be stable today.  She looked good, and Crystal (awesome nurse) spent a long time combing Katy’s hair, and I got to massage her shoulders and neck with lotion.  They have reduced her meds by around 20-25%.  She is still “in and out,” but it appears more of her actually resting instead of being drugged.  They extubated her this morning, and plan on doing the VAC tomorrow.  The bleeding seems to have stopped (fingers crossed), and her temp has not spiked as high as before.  These are all good signs.  She still has a LONG way to go, but I hope we continue to see this forward momentum.  The plan is still for her to go back to the OR on Monday, and (barring any setbacks) there are no plans for any procedures this weekend.

I wanted to say a continued “thanks” to the ladies for bringing me the WONDERFUL food!  It is very sweet of them to take the time to feed someone they don’t know, and they are putting a lot of effort in keeping me fed well. 

I started thinking of stories to tell about Katy.  One that some people might not know is how we met.  We both worked as bus drivers for Leander ISD, her for the insurance for Amber, and me so that I had regular income while performing the bar circuit in Austin.  I actually met Amber before I met Katy.  I will save Amber the embarrasment of telling you all exactly how she introduced herself to me, but it was CUTE.  I became a bit of jungle gym for the kids in the bus yard, airplane rides, etc, and Amber was always up for a ride.  Not knowing that she was Katy’s daughter, I continued to play with her while I was waiting for my routes.  One day I went to my bus and found it full of bees because SOMEONE had opened the windows.  I was upset at whichever bus-fueler had opened my windows and went inside to yell at him.  Him turned out to be Katy…and I did no yelling.  I actually was stunned at her smile.  I acted like it wasn’t a big deal, and then backed out of there.  She was so beautiful!  I would see her around the bus yard, but never had much reason to talk to one another.

Fast forward several months, and I am scheduled to take my high school science teacher’s class to a science symposium in Georgetown.  There was supposed to only be 1 bus going, but they changed it to 2 busses.  It just so happens that the other bus driver was Katy.  We ended up spending 8 hours on my bus talking all day.  Who knew I was talking to the love of my life?  More of the story to come.

Love to all,

Al

Wednesday…Surgery and stability

Katy went into the OR at around 9am, and was out at around 11:30.  Dr. Purdue removed a quarter sized piece of muscle from her leg, and drained a little puss from her arm.  He opted not to close the wounds right now, but did debriede the leg and hip a little.  She is scheduled to go back on Monday for closure.  Until then, the plan is to VAC her wounds (VAC is a treatment that usues a form of suction to remove infectious fluids-if I understand it correctly).  I’m not sure of the timeline, but we did talk about grafting her wounds at some point in the near future.  Approximately one week after the closure, Katy should be well enough to start actual rehab.  They plan on trying to extubate her tomorrow. 

Katy was stable all day, and though she was sedated, she opened her eyes a few times.  She looked great.  Her color was good, and she was breathing a little deeper than I have seen her.  Our friend Becky flew in for a short visit.  It is really convenient to have Love Field so close to the hospital. 

Not a lot else happened today..in Dallas.  Back in Kingwood, a very nice family worked on our gardens in the back yard.  Amber and Jay worked on the vegetable garden.  I understand someone has volunteered to redo the front flower beds, as well.  Thanks to you all for all the hard work.  As many of you know, Katy LOVED having flowers and plants in our yard. 

The other day, while she was extubated, I had told Katy that Robbie (nurse) was going to come brush her teeth.  She made a face like a dog baring her teeth.  I asked if she planeed on biting him?  She said “no..I LOOVE when they brush my teeth!”  I don’t know why that has stuck in my head, but it has.  Even in all of this, Katy has shown signs of her sense of humor.  She also showed swhat we all love about her, her sweetness.  When she first awakened, I had to explain things to her.  The first thing out of her mouth was, “my baby doesn’t know me.”   As much as that broke my heart, I explained to her that is why we are fighting.  Then she asked if I was ok.  When I asked why she was worried about me, she asked if she had gotten me sick too.  I told her I was fine, that the kids were fine, and that the house and dogs were doing well.  She then asked if my stepmom Faith was doing OK.  Faith just had another (long history of unexplained back pain), and serious surgery.  When I told her that Faith was home, Katy said “tell her I am proud of her.”  Just a few minutes after learning of her illness, amputations, etc..Katy was worried about everyone else.  It truly shows just how caring she is.  I thought you all might enjoy hearing something other than just medical talk.

Love to all,

Al

Tuesday….a good holding pattern

Katy was stable all day, today.  Her numbers looked good, and she was kept comfortable and resting all day.  As I wrote earlier (and reminded of by Dr. Purdue), Katy is scheduled to go in to the OR tomorrow morning.  They plan on closing her arms and legs and take a look at her 2 areas to see if they will debriede or have to cut off the necrotic areas.  Also, from what I her, they believe that the surgery yesterday did remove the trouble area in her stomach.  Let’s all hope so!  I am hopeful that, if she continues on this path, Katy will be on the track towards accute care after these procedures.

I met, briefly, with a member of the rehab team.  She told me about what rehab they would be starting with, and how the process works.  The shoulders will be a primary focus since the shoulder kuscles will be the keep to her mobility.  The rehab will start by moving the limbs in their range of motion, and then getting Katy to repeat the range of motion on her own.  She will be weak, and not have stamina for a while, but through repitition will get stronger.

I look forward to the slew of visitors that will coming this week.  It will be good to see some friends, and to have them be able to visit with Katy.  It was also great to hear from my long-lost buddy, Scott today.  I look forward to that cold beer we talked about.

Many of you have been e-mailing me about taking care of myself.  I am trying.  I try to sleep, I walk a lot at the hospital, and believe me I am eating.  I will try to even work out again soon.  Thank you for your concern.  Therapeutically, I play my guitar.  It is amazing how much that can soothe my mind and heart.

From what I hear, Tug is giving the doctors hell.  He wants to be released so that he can be at training on Tuesday.  Give them hell big man!  For those of you who don’t know Tug, he is a hell of a fighter.  Despite his massive size and strength, he is always willing to open the gym for anyone wanting to work out.  He has provided a place for the wrestlers to ply their trade for a long time, and I will always be grateful for the lessons he taught me (including how to pop someone’s elbow out of socket if they don’t cooperate).  It was source of great laughter every time Tug would crawl in the ring with some upstart.  In a matter of seconds Tug would be telling averyone around him what he was doing, how to apply pressure, etc, all while the new wrestler was frantically screaming and trying to get away from Tug’s 450 pound onslaught.  Good times.  As I mentioned earlier, Katy trained for a while.  Most places treated the girls differently than the guys.  Tug treated Katy as a lady out of the ring, but would expect the same from her as anyone else in the ring.  She really appreciated that about him.

I will be at the hospital all day tomorrow, as Katy will be in surgery, but will write more tomorrow night.

Love to all,

Al

Response to a few requests…

First, let me start by saying that Katy is doing fine this morning.  All of her numbers continue to be stable, and the doctors have nothing planned for today.  They plan on doing the revision/closing procedure tomorrow.

Many of you have asked for address info to send cards etc.  I have forwarded my mail, so please send all cards to ..

Al Hayes 3614 Bear Lake Dr  Kingwood, TX 77345

Thank you, again, for all of your support.  I will do the daily blog tonight, and give you all of the more detailed information.

Love to all,

Al

Monday…final update

Katy made it through the surgery today.  They removed a small section of her stomach, the part that was bleeding, and closed her stomach back up.  They are hoping that will solve the continued bleeding problem.  They inserted a feeding tube below the wound so that she could continue GI feeding and keep her tract stimulated.  The doctors also gave her a NG tube to keep her stomach compressed.  Apparently, when the stomach isn’t in use, it inflates with gas or air.  By using the NG tube, they prevent the stomach from putting pressures on the repaired area. 

Katy’s vital numbers looked the best they have in a week and a half!  Her heartrate was below 100, her breathing was below 20, and her blood pressure was stable.  She did not have a fever!  It seems (at least preliminarily) that her elevated numbers might have been caused by this injury.  Let’s hope that is the case.

The doctors were able to use an incision that was only a few inches long.  They are taking precautions to prevent cross-contamination since the cut is in the vicinity of the necrotic area on her lower abdomen.  They used antibiotics and a wrap to help prevent any germs from spreading.  They are planning to debried or remove the two areas of necrotic tissue (lower stomach and left hip) Thursday or Friday…as long as Katy continues to do well.

I’m sorry not to write more, but I am in need of doing some apartment cleaning, laundry, and then maybe some sleep.  I will write more tomorrow.

Love to all,

Al

Monday…continued

I got a visit from a doctor on the emergency surgical team.  Katy is still bleeding.  Her body cannot take continued embolisms, so they are performing surgery on her stomach.  There are 3 plans of attack.

1-Try to surgically repair the areas that are bleeding.

2 – If #1 doesn’t work, then cut a wedge out of her stomach (the bleeding area) and close her stomach wounds.

3 – If neither of the above work, then they will perform gatric bypass.

Though I am not a fan of having Katy go through any more surgeries, I would rather it be ONE surgery, than 5 or 6 of what we have been doing for the last week.  I should know more info after 5pm.  There are always risks, so please say a prayer for her.

A thought occured to me…we now have Catholics, Baptists, Methodists, Lutherans, Unitarians, Presbyterians, Reformation Baptists, Hindus, Muslims, Agnostics, Atheists, Orthodox Jews, Jews, Cowboy Church members, Non denominational, Eastern Orthodox, Budhists, and several others not only praying for Katy, but meetting peacefully for the sake of fund raisers, etc.  Maybe, just maybe, if this many people of diverse faiths can get together on something they feel strongly about, they could…..  Lofty goal, or psssible reality? 

I will post more as I get info from the doctors.

Love to all,

Al

Is it Monday?

The days all seem to blend together these days.  Katy was resting well when I saw her this morning.  They were able to embolize the artery that they believe was the cause of the bleeding.  Now we just wait and see.  Lickily, her blood cultures only returned a litle bit of yeast…NOT MRSA.  That is good.  MRSA would be a horrible set back, and a vicious infection to battle.

The docotrs will monitir her blood pressure, h&h, and other levels to see if the bleeding has stopped.  I hope this is the last time we have to go through this.  I asked what is causing this bleeding to occur.  I get a few different answers that all add up to “we don’t really know.”  The concensus seems to be stress.  I believe that is true, plus I feel that the antibiotics, lack of consistent gi feeding, etc all contribute to the problem.  That being said, what do I know?

After a sleepless night, my plan is to be up here through the 5pm visit.  They should have her resting in the evening, so I will go back to the apartment and try to do luandry, eat, sleep.  I know I should be using the exercise room, but I haven’t felt up to it.  Maybe soon.  The emotional ups and downs are keeping me constantly tired.

I will post more info as it is given to me.  These days are the hardest.  Not much is happening, but I feel the most anxious.  Information will be slow as they need to evaluate for a day or so to make sure she isn’t bleeding.  This will probably push her surgery back a day or so.  She is scheduled to have surgery this week to analyze her wounds, maybe FINALLY close them, and look at the areas on her hips that may need debriedment or surgery. 

Love to all,

Al

(continued)

I just got a call from the GI doctor, Dr. Cavazos.  They were not able to determine exactly where Katy is bleeding.  IT does appear to be in her stomach, again, and they are sending her down to RI to use the same dye that they used to find the bleeding last time.  I will post more as I get info.

Love to all,

Al

Sunday..a day of mixed emotions

I woke up today to the sounds of my sweet Arielle needing a bottle…at 2:30am.  It was so sweet of Michelle to bring her up for weekend.  Between Katy doing so well the last two days, Chris, Michelle, and Arielle, I had a good weekend.  I was sorry that I couldn’t be there for the amazing Crawfish Broil (thanks Kelly and Joey), but I was there in spirit.

Unfortunately, I got a call at 7:30 tonight with news of a set back.  Katy started bleeding in her GI tract again.  The doctors are sedating her, and then scoping her as I write this.  I hope that they find the problem to be one that is easy to fix. 

Katy has been awake for the last few days, and talking up a storm!  Due to a combination of being extubated, weening off of the versed, fluid imbalance, and a fever, reality was a little skewed for her.  She asked Amber if Amber was hungover today!  She had many moments of clarity, and the altered reality is all a normal occurence when patients are going through a withdrawal from amnesiatic drugs and extubation. 

It was SO nice to talk to Katy, and see her improving.  It broke my heart to get the call about her bleeding.  Robbie, her nurse (GREAT guy), took the time to talk to me on my to my car to let me know the details of how they discovered the bleeding.  He spends a lot of time every day double checking all the info from all of the different sources, and verifies that all meds/procedures are, in fact, the correct ones.  I always feel really confident when he is with Katy.  Arnie (another GREAT guy), another nurse, is the same way.  He makes sure to find me and tell me all of the info that I would ask if he didnn’t.  He is kind of a kindred spirit.  He is a father of 2 (one on the way), massage therapist, and musician!  What are the odds?  The nursing staff at Parkland have been amazing, and I wanted to thank them publicly for the care they are giving Katy.  Please include them in your prayers.  They are people who truly care, and that makes this whole experience a little more bearable for me.

As most of you know, I am a wrestler.  One of the people who trained me, gave me some of my first breaks, and always had a spot for me is Tugboat Taylor.  I received word from Tug’s son, yesterday, that Tug had a minor heart attack.  Please say a prayer for the Taylor family.  They have fought through Tug’s wife’s illness, and now are fighting for Tug.  The whole family means a lot to me.  They always ask about Katy and the kids.  They have always welcomed my family in any locker room.  I have been given the opportunities in the ring, and Katy even trained there when she was considering a wrestling career. Thank you for including them in our prayers.  I know Tug will recover, and being training again very soon.

I will post more as I find out from the doctors.  Thank you all for your continued love and support.

Love to all,

Al

Friday…a good day

Today was a day filled with progress.  Katy’s numbers are still stable, and her color is great.  Though it doesn’t sound like a lot is happening, that is a really good thing.  In situations such as this one, once a certain level of success is achieved, it is better to stay steady and slowly progress.  It is far easier on her system now, and she is resting well.  The nurses changed her dressings, bathed her, washed her hair, and turned her to look out of the windows to see a beautiful, sunny day in Dallas.  Katy’s room overlooks the Dallas skyline, and Katy loves seeing the outdoors.  She passed her spontaneous breathing test, and they will look at taking her tube out tomorrow.  All of her drains are removed from her abdomen, and she is no longer passing blood.  Her necrotic tissue on her left hip is not being treated right now because it is showing signs that her body may be processing it.  They feel that she might not need surgery on it, but might just require debriedment (speeling?)  We will wait and see, but I hope that her body continues to kick this thing’s @$$!

I have tried, with this blog, to concentrate on the positive of this situation.  I would like, just this once, to address some e-mails that I have been receiving.  First, I would love to thank the numerous people who find my daily ramblings inspirational.  Though this started out as a way for me to inform our loved ones of Katy’s progress, I am so glad to be connecting with all of you.  As much as you say I am helping you, you are helping me.  I smile every time I open an e-mail/comment from another person cheering on my Katy!  The e-mails I would like to address, though, are the dozen or so suggesting that I should just “let Katy go,” or “Katy wouldn’t want to live like this.”  To those people I would say that you really don’t know my wife.  As I stated in an earlier blog, most people think we are crazy.  How on earth do a massage therapist /natural/ granola girl and a wrestling/musician/hang out in smoky bars guy survive each other?  They fail to see that we share a deep love of LIFE together.  Though Katy and I have different paths to how we experience life, we both appreciate the other’s ability to take risks, and to love without fear of being hurt.  Katy DOES want to live (she told me so), and she will overcome this.  This is nothing but another chapter in “the Adventures of Katy and Al.”

To set the record straight, Katy’s brain is fully functioning, her kidneys are fully functioning, her liver enzymes are close to returning to normal, her thyroid is good and functioning, her lungs are in great shape, her heart is in great shape, her hormone levels are as good (if not better) than most 24 year olds (and that is post-pardom, and after a hysterectomy), and her digestive system is back on track.  “Letting her go” is not an option.  Please know that my saying that is not my selfish wants, but a realistic look at what Katy would want.  If things were way different (brain damage, life-support forever, etc), then I would be having to make some quality-of-life decisions.  As of now, the decisions I am making are for the purposes of getting her well enough to get back to Houston so that she can be a mom to our 3 wonderful kids, and to see her succcesfully complete her rehab.  Katy will always be remembered as the greatest massage therapist…ever..but she is way more than that.  As rehab progresses, Katy will have thhe chance to study natural medine, or anything else she chooses.  I know her.  She will not want to sit still.

I am not unrealistic in thinking that Katy will have her down times, and that she has some very tough rehab in her future, but I know how tenacious she is.  Katy will rise to this challenge.  She will prevail, and she will be kicking my butt one day soon.

Others of you have called or written to me being very sad at our situation.  Though it is not what we would have chosen to happen, it has, indeed, happened.  There is nothing we can do about it now, and to waste any energy on battling what you cannot change would be just that..a waste of energy.  We are where we are, and we will move forward from here.  Take the time to smile as you think about her first night home.  Think about her talking with friends at an MOYC event.  Think about her and I celebrating our 11 year anniversary this July 31st. Katy is my hero, my redemtion, and Katy will be a role model, and an inspiration, for our kids.  She is the toughest, and sweetest, person I have ever met (she has to be to tolerate me), and she will find a way to make all natural, organic, low calorie, high in antioxidant, naturally sweetened lemonade out of the lemons we have been handed.  I will be the happiest man on earth just to drink the lemonade along side of her. 

Thanks for today go to Megan from the Dallas moms’ group for the awesome meal, and to Dr. Tutt for succesfully taking on the task of trying to return my vertabrae to their god-intended position.  I’m sure sleep will come much easier now that my back is no longer in the shape of a “Z.”  Chris is on his way here, and Michelle and Arielle will be here tomorrow..YEAH!!  My mom and sister are eating my mom’s homemade lasagna with the kids (I am JEALOUS!), and loving on the animals for me. I hope you all have a wonderful weekend.  Make sure to hug and kiss your kids.  Tell your spouses, siblings, parents, and friends that you love them.  Also, take the time to love yourselves. 

Love to you all,

Al

Thursday

As of when I left the hospital, Katy had not needed a bloof transfusion for 48 hours!  The doctors removed all of the drains from her stomach, her blood clotting was normal, and they started feeding her her GI again.  Her H&H levels are 9-26 (completely normal would be 13-30, but that is great for ICU).  She is not requiring dialysis at this time, she is off the antibiotics, and her vitals look good.  Also, her cortisol levels were in the normal range.

While all of this is great news, she is by no means “free and clear.”  These are all just very good steps to getting her out of ICU.  I started the process of finding out our options with regards to accute care, and rehab.  There are MANY variables that are being explored, and almost all of them are made more complicated by the social security administration.  As I go through this proces, I am made aware of some of the real “health care reforms” that need to be made.  Apparently, being a quadruple amputee doesn’t automatically qualify you as disabled to the SSA.  They asked what she did for a living, I said “massage therapist,” he replies “I see that on your tax returns…are the doctors sure that she will be disabled for a specific length of time?”  I almost laughed, then I bit my tongue before I said something really offensive….

I have met so many of the other families in the ICU, and they have helped me (without their knowledge) to realize that we are the lucky ones.  Where as it can be really frustrating to not have anyone to blame for what happened to Katy, it can (though it seems counted to logic) be worse to have a person to blame.  One family’s patient is a 52 year old woman with cerebral palsey.  She has been in a wheechair for her whole life.  For some unknown reason, the woman’s caregiver decided to forceably hold her feet in boiling water.  She is now a parapalegic.  The woman’s mother is a very sweet lady, and we have talked at length.  I know that we all get a bit of relief seeing each other every day and asking about our respective loved ones.  I can’t imagine what possesed the caregiver to do such a thing.  Even more, I can’t imagine how you process that kind of betrayal and pain.  Personally, it brings out a very violent, and dark, side in me to even think about someone deliberately hurting my loved ones (very male reaction, I’m sure), but in the case of someone the family has trusted for years…..I know it would make me question every decision I had made for the patient I was supposed to be advocating for.  Please say a prayer for them.  I can’t remember their last name now, but they are handling this with dignity and grace.  I am learning by watching them.

I would like to, again, thank the Dallas mother’s group who keeps feeding me all of this amazing food!  Between them, my own cooking, and the market diner, I have not had to endure any greasy fast food.  I think I am getting fat!  I would also like to thank Ruth Carter-Wilson, and her dad, Dr. Carter.  Ruth put me in touch with her dad, who was a founding member of TIRR (Texas Institute for Rehab and Research).  Dr. Carter and I had a good talk today, and he has given me many things to explore.  I thank both of them for taking the time to inform me. 

I had to have the “talk” with Katy today.  She was getting amped up, trying to move, and getting really agitated. It broke my heart that she kept asking me to take her out of there.  When I said I couldn’t, she asked why.  The nurse and I were worried about her busting a suture, or getting her bp too high, so I had to tell her about the amputations.  She took it well.  Unfirtunately, the meds give her amnesia.  She remembers some things, not others.  They were not giving her an elevated dose when I left, so I feel that she will remember this in the morning.  She was resting when I visited.  It was one of only two times since she has been in the hospital that I have seen what I KNOW is her just sleeping.  I am happy about that.  Sleeping is so much more vital to recovery than being doped to unconsciousness.  I let her rest, and will be by again in the morning.  They have nothing planned until 6am, so i will be there for the 8am visit.  She seemed to understand what I was explaining to her, and was very articulate for not being able to talk.  With the docotr’s approval, she did try to move her arms.  We focused on the left arm, as the right is at a higher risk of bleeding.  It must be very difficult to re-learn to raise your arm.  I tried it.  I realize that most of us raise our arms thinking about moving our hand up.  Try to move your arm by lifting the middle of your bicep.  It is a strange concept.  She may also have some sensation of having her whole arm there, but it being like her amputated part is just asleep and heavy.  We worked on it for ten minutes or so, and (being the spitfire that she is) promised to rest…but didn’t.  When she thought I wasn’t looking, she kept working at it.  God, I love her!  It is that spirit that will get her through this.  And, believe me, she will get through this. 

Most people don’t know that Katy and I changed our wedding vows to not say “’till death do us part.”  Ours said “’till the end of time.”  I am holding her to that.  To quote one of mine and Katy’s favorite Firefly lines..”We’re still flying.”

Love to all,

Al

Wednesday Update

Katy was stable all day.  Her H&H levels were improving, and her respatory rate was between 10-20 all day!  They are monitoring the blood coming out and thing that it is just blood being processed from her previous wounds.  She was awake, and communicating, throughout the day.  They removed the sheath from her leg, and now we just wait and see.  They also got the antibiotics worked out, and should be removing the drip soon.

For all of you that have sent messages, and I haven’t replied, I am sorry.  I am getting a LOT of emails/comments, etc every day.  I am reading them all, and I appreciate every one of them.

Also, a HUGE “thanks” to whomever the anonomous people were who delived the nice present to me!  I was called by the office telling me I had a package.  Someone left me a little note and a new practice amplifier for my guitar.  Very nice.

More tomorrow.  Laundry, now.

Love to all,

Al

A little bit of good news

This will be a short update.  I am absolutely exhausted!  I will post a much more detailed blog later.  Thanks for your understanding.

Katy was still bleeding this morning.  They sent her to nuclear medicine to track down where she was bleeding.  Luckily, the blood was coming from an artery and NOT seeping through her stomach lining.  She then went to IR (intervention radiology), and they embolized the artery.  Simply, they put a wire up her femoral artery and coiled off the bleeding artery with titanium wire.  They then ran contrast dye to make sure it wasn’t still bleeding.  There is still a possibility of more of these (not uncommen).  They left the sheath in her leg so they could evaluate her, and quick fix if anything else starts to bleed.  If no problems occur in the next day or two, then they will remove the sheath. 

I also addressed a concern of mine.  I was under the impression that she should be done with her course of antibiotics.  It turns out that EVERy time she goes in for a procedure, they zero out her order and restart it.    In the morning I am meeting with the doctors to find out exactly when she should be (or have been) done with the antibiotics.

Also, I am addressing whether or not she should be getting treatment for menopause due to the removal of her ovaries.  As she has been in bed for a month, I am worried that her bones will become brittle.  With rehab in the near future, I want to make sure we are fully prepared.

I would also like for you to all send a prayer to the Strickland family.  Their 21 year old son, Cody, passed last weekend in the BICU.  I had the pleasure of meeting the family, and was there when they had to make their toughest decision.  James and his family had to what no parent should ever have to do.  I pray that they may find peace.  Thank you, in advance, for adding them to our prayers. 

Love to all,

Al

Tonight…a set back

Katy came out of surgery OK earlier today.  This afternoon it became obvious that she was continuing to bleed somewhere in her GI tract.  I gave permission for a scope of her GI, and it returned the results that she is seeping blood from the lining of her stomach and intestines.  The problem with seepage is that they cannot go in and plug the hole.  They are giving her FFP (fresh frozen plasma-the part of the blood that has clotting factor in it), and vitamin K.  They think that the blood is too thin, and that the thinning is causing the bleeding.  We are still on “wait and see” mode.  Please pray that she passes this newest challenge to her recovery.  If we can get through this, then we should be able to move her to accute care in the next couple of weeks.  I hope the current treatment works.  I really would like to see her well enought to go to the much nicer environment in accute care.

Love to all,

Al

Monday Mid-day Update

Katy went in to the OR at around 11:00am, and I was able to see her around 3:45pm.  Dr. Purdue said that she did well in the surgery and that they were able to close all of her wounds.  This does not mean that everything is done.  They will have to evaluate her to make sure nothing pops up in areas, or blood cultures, before they can give us the all clear.  Unfortunately, she is still bleeding from her GI tract.  The GI team is getting ready to scope her to see what is bleeding.  If it is the same area that was bleeding on Saturday, then will do IR.  IR is where they run wires up from her femural artery untill they isolate the artery that is bleeding.  Then they “coil” it off.  I am stationed at the hospital, and have located a window (literally a window) where I can squeak out a little internet access.  Katy is still sedated, and they increased her dose from 75 mics to 100 mics due to her pain.  She was grimacing and moving so they decided to increase the meds.  I will write more later.

Love to all,

Al

Events of the last 2 days…and tomorrow

Thank you for all of the well wishes for my visit with the kids!  I missed them SOO much, and it was great to see them.  They are now back in Kingwood, and better be studying!  

Katy was resting well ysterday, and then had a minor event.  She started bleeding through her feeding tube and ileostamy bag.  They scoped her, and found an ulcerated artery in her stomach.  The doctors were able to clip it off, and use epiniphrine to stop the bleeding.  They put the breathing tube back in, and stopped GI feeding.  The breathing tube should come out after the surgery tomorrow, and they will feed her through the GI again once they can make sure the bleeding has stopped.  Katy is second on the docket for surgery tomorrow.  They are going to look at her wounds, revise if needed, and then close her wounds.  They are giving her blood to regulate her temperature and fluids, and her numbers are looking better as she is being given the blood and resting.  I will give updates as I can tomorrow….be patient.  No news is good news.

I want to take the time to say “thanks” to some people.  I know that I am forgetting some, but I am operating on very little sleep.  If I forget you, I’m sure I will remember tomorrow!  I want to thank Jen, Betta, Pat, Britt, Micheele, Thom, Bill, Tina, Ike, Megan,  and Jessica Perez for keeping the home-fires burning while I’m away.  All of these people (and many others) are  making it possible for me to be here with Katy.  Thanks to Megan, Paige, Courtney, Rachel, and the rest of the Mother’s group in Dallas for all the wonderful meals, and for putting up with me not being where I said I would be a couple of times.  Thanks to Chris for watching the house while the kids were here, the use of his air card, and for being the best friend you could hope for….(greatest EVER (inside joke)) Thanks to Kylee for all of visits and her wealth of medical knowledge!  Thanks to Lisa, George, Jim, and Brandon for visiting me this weekend, various meals, and keeping me laughing.

I will keep you updated after she is stabilized tomorrow.

Love to all,

Al

Friday update

I saw Katy this morning, and she was looking good.  They sedated her a little, so she was sleeping,  but that is probably best right now.  In case you haven’t heard, the doctors removed the breathing tube from her yesterday.  Her blood gasses and creatinine levels are looking good.  They are skipping dialysis today to see what her levels will be on her own.  Though we still have a LONG road to recovery, visits where receive no bad news are great!

Amber and Jake are coming up with Bill and Pat this weekend.  I am SOOOOO excited to see them!!  I plan on taking a little time to go to dinner, maybe a movie, and visit the trainscape at Children’s Hospital while they are here.

I was asked for some of Katy’s favorite quotes or sayings.  We both have so many that it is difficult to narrow it down to a few.  If you want to know what Katy found inspirational, then watch/listen to some of the following things.  These things always make think of Katy, and the messages are ones that Katy looked to for inspiration.

John Denver (folk singer)

The Steele Drivers (new roots/bluegrass band)

Firefly (Best television show ever!)

Daily Show with John Stewart

Colbert Report

Any of the paranormal hunter shows on sci fi channel

She loved all of these things.  Her and I would lay in bed and watch Daily/Colbert and decompress every night.  It reminds me of how much we rely on our sense of humor to deal with overwhelming situations.  Katy loves to laugh, and has the most beuatiful smile ever!  Make sure each of you take the time to find the humor in any situation….it will keep you from going insane.

I am reminded of a saying…”People will reveal their true character by how they treat someone who can do nothing for them,”  You have all revealed yourselves to be of fine character, and have renewed my faith in humanity.  Thank you.

Love to all,

Al

Wednesday…one more surgery

Sorry to have taken so long to write.  I don’t have internet at the new place until this weekend (thanks Chris for the aircard that is on the way).  I hope I get all of this right…it’s been a long day.

I saw Katy twice this morning (6am and 8am).  We had a good “talks.”  She went in to surgery at noon, and was ready for us to see her at 3:00.  As has ben the case, we got asome good news and some less than good news.  In the beginning of this whole illness, we were getting a lot of bad news.  Then we started getting a lot of bad, and some good.  Now we are getting a little bad, and a lot of good.

First the bad news.  After examining the wounds, they had to move the amputations on both arms to just above the elbows.  Though it is not what we wanted, it had to happen.  The infected tissue under the skin was dead, and the toxins were slowing her healing.  Every time the doctors have removed dead tissue, her overall numbers get better.

Now for the GOOD!  Katy’s blood gas tests are great.  Her levels are so good that they could have taken her off the respirator today.  They will put it on assist mode tomorrow, and if she does good for a day, they will remove the tube and she will breathing on her own!  I hope the test come back indicating that she can be taken off the respirator.  The renal doctors thnk she is doing well, and they are seeing her creatinine numbers come down (that’s good).  A healthy person would be a 1, and Katy has been as high as 10.  She is now in the 2′s!  Also, she is doing well on the little bit of nutrition they are giving her.  They are going to try and remove the IV nutrition and go “full bore” with the gastric feeding.

These are all good signs.  For the next  few days they are going to do the things listed above, and watch her vitals.  After that, (Monday) they will look at her wounds, revise if needed, and then close the sites.

None of what is happening has been easy.  These are not decisions that I think anyone should have to make for their spouse.  As I have spent so much time in the ICU, I have met other families.  Sadly, some of the people they are visiting don’t make it.  Even more sad is the fact that some people in the burn ICU don’t get visitors.  I started visiting Joe at the Kingwood ICU, and now I have visited with Cody, and with 2 others that I don’t know.  This whole experience has taught me the true value of people treating each other humanely. Love each other.  Love yourselves.

Love to you all,

Al

Monday surgery…looking forward

Dear Family, Friends, and Wonderful People We Haven’t Met…Yet,

   I had a GREAT conversation with Katy this morning (her – non verbal).  She smiled, laughed, cried, moved her head…it was great to see her so aware!  She went in to surgery around 11am, and was done 2 1/2 hours later.  As is the case every day, we got a little bad with the good.  Unfortunately, they had to amputate to just above both knees.  Though it was not what I wanted, it was needed.  They were ablt to close the wounds on her legs, and they will do her arms on Wednesday.  They believe that they will have to take a little more of her left arm (just above elbow), but say her right arm is looking ok.  They won’t know for sure until they do the procedure.

Now for some promising news.  They did not do the trachiostomy because the doctor believes that she will be able to breathe on her own by next week.  Once again, we won;t know for a few days, but she is showing progress.  She is responding well to the dialysis, and is producing clearer fluids.  Her blood pressure and heart are looking appropriate for her post surgery. 

I checked in to an apartment through a charitable organization.  I will be moving out of the hotel in the next 2 days.  The apartment will allow for my kids to come see me, and is, incredibly, cheaper than the hotel.  It is furnished, and has laundry facilities, etc. 

Cool award for the day goes to Ruth.  Her dad is a fantastic rehab doctor and has been gracious enough to send info our way.  After a dead end while talking to the social workers (they said she couldn’t come back to Houston), Doctor Purdue agreed that she needs to be in Houston for rehab and said he would sogn off on it when the time comes.

Today was a LONG day.  Not in the amount of hours, but in the mental and emotional load on me.  It was difficult to not feel divided as Katy was in surgery, dealing with errands to complete legal paperwork, the apartment, coordinating issues at home, and trying to find time to eat!  So with that, I am going to actually try to get a solid few hours sleep.  Remember to tell everyone that you love that you love them.  No matter how healthy you are, no matter how careful you are, no matter what you do- you will never see it coming if something like this hits you or a loved one.  Also, please take the time to have some uncomfortable conversations with your spouse.  It is too easy to say “unplug me if…or do this if,” but very rarely are the decisions we have to make all or nothing.  I have talked with so many families in the ICU that are dealing with these issues.  They all have “rare cases,” and most are trying to find a path to what their loved ones would want, and wishing they had talked about it in advance. Thank you all for giving me the time to be with my beautiful Katy.

Love to you all,

Al

5 hours from now..Monday morning

In 5 hours I will be headed to the hospital.  Soon after, Katy will head to the OR for her follow up surgery.  Please keep her in your prayers.  I know that once we get through this surgery, and the following week of recovery, we can then begin the true uphill journey to her recovery.  Thanks to all of your for your messages.  Your words help keep me going.  I will update once I get a chance.

Love to all,

Al

Sunday part 1

I had my morning meeting with the doctor and discussed the plan for the next 36 hours.  Katy was starting dialysis when I left her room at 2:30pm, and I have given permission for the surgery tomorrow.  Her breathing was still doing ok, and the doctor is liking the way her lungs are looking.  They may move her to CRRT (constant dialysis) instead of 3 hours daily because they feel it is easier to keep her stable that way…less harsh on the system.  There is still some necrotic tissue that probably needs to be removed.  As hard as that is to hear, I now know that it is in the best interst of Katy to do so.  Once we can get all of it gone, then she will have best chance of recovery.

Some tidbits of good news…  Katy opened her eyes today, and was communicating through nods and blinks.  She even smiled when we talked to her about Amber!  It was so nice to see her smile!!  She even laughed when Chris and Kilee were in there due to Chris telling her funny stories about the jokes we play on each other.  I miss her laugh and her smile, but I know that all of this will allow me to see her beautiful face smiling and laughing again. 

Thanks to all of the people who are writing comments and emails.  So many people are contacting me that I have never met.  I think it is wonderful how many people are sharing their stories with us.  I have had a few e-mails from people who have had loved one, or themselves, in this same situation.  It is nice to hear how many have pulled through and consider themselves blessed to be alive. I will post more after the evening visits. 

Love to all,

Al

Saturday with Katy

Things were pretty much the same today.  They aren’t doing any procedure until Monday, but they are monitoring her.  Katy’s vital signs looked good.  We had a chance to ask some questions of the nursing staff, and got some good input.  Our friend Kilee (who is an OR nurse) came up to Dallas and asked some great questions of the nurse.  It was like watching two people speaking another language…I’m glad she understands it all!  Another friend, Sherri, came up for a visit while in town on business.  She saw Katy, and did some very sweet shopping to make sure I had enough supplies for the coming days.  We are so blessed to have all of you wonderful people in our lives!

As of today, the strep infection in diminishing, her lungs were looking better, and her heartrate is doing good for the situation she is in.  Her blood oxygen levels are good, and her skin looked much better after dialysis. She did open her eyes this evening, and answered (by blinking) the nurse’s questions.  She is by no means out of the woods, but we will take each small piece of progress as a victory for the good guys. 

Dr. Purdue takes over the 6th floor burn ICU on Monday.  I like him much better than the current doctor.  He seems much more sincere in our dialogue, and seems much more respectful of the decisions that I am have to make.  Katy is scheduled to go into the follow up surgery on Monday morning.  Until then, we will keep waiting.

I am AMAZED and humbled at the outpouring of love that my family is being shown.  I thank you.  My children thank you.  And, in time, Katy will thank you in person!  Keep the faith.  If anyone can beat the odds (I should say CONTINUE to beat the odds), it will be my sweet, strong Katy.  I can’t wait until I am able to talk to her about all the love that you have given us.

Love to all,

Al

A new day…and a story

Today is a new day, and I know that we can get through this.  I must say that I am AMAZED at all of the love and support from both friends and strangers.  I decided that I would like to share some stories about my incredible wife that most of you don’t know, and that might make you all smile.  I hope you enjoy this one.

In the Spring of 1999, I underwent surgery to remove what we thought was a swollen lymph node from behind my left ear.  I find out (after the procedure) that what I had was called a swanoma.  A swanoma is a big knot in one of the nerves going in to my face.  The doctors had to pull the left side of my face forward, cut my nerves, and remove them.  I had facial paralysis for 9 months after this (in all of our wedding pics I can only smile with half of my face).  I was in the hospital overnight, and despite the doctors/nurses demands, Katy stayed right there in my room the whole time.  The doctor had said I was OK to eat all I wanted, but the nurse insisted on bring me a small cup of soup and a sliver of Jello.  Katy went across the street to Waterloo Ice House (where Ihad been doing several gigs), and got a cheeseburger and a piece of chocolate pecan pie…YUM!  She snuck them in in one of her HUGE purses, and fed me.  She had to feed me because Nazi Nurse (her nick name) had restrained my left arm (I’m left handed).  Later, Katy wedged herself in to the most uncomfortable of positions so she could be next to me.  When the nurse would come in to check my vitals, she would grab my arm very roughly.  Katy asked her to stop.  After 2 times of the rough treatment, Katy reached up, snatched that nurse by her arm, and let her know how it was going to be.  That was the last time we saw that nurse.  After that, a much nicer nurse handled all of my vitals.  My hero.

People have always said that we are crazy.  Maybe some people don’t understand us, but I can proudly say that we are crazy.  And, thankfully, we have always been crazy about each other. 

I will again soon. 

Al

Today was the toughest day of my life…

Today I had to make the toughest decision I have ever been faced with.  I held the doctors off on amutating Katy’s extremities yesterday.  This morning I called the case managers for 3 hospitals, and had started the process of transferring her to Baylor Medical for hyperbaric oxygen treatment.  We had been told that her condition was due to necrotizing fascitis, and had Baylor at least ready to see if they would take her.  I met with Dr. Perdue (head surgeon), and was told that her diagnosis was not necrotizing fascitis, but purpura faminias (spelling?).  The blood clots and damage to the tissue was permanent.  I got opinions from Baylor, a doctor in Ohio, a doctor in Virginia, and another doctor from Dallas, and they all said the same thing.  The only way to treat this was to remove all necrotized (dead) flesh.

I searched for every possible way to avoid this.  The determination by all 4 sources (6 doctors) was that if we didn’t remove the dead tissue, that it would start to feed toxins to the rest of the body and make her worse.  Her elevated levels of sulphur and phosphates indicated that the infection was starting to rise again.  Time was very important.  I stressed to the doctors that we wanted to take a VERY conservative approach to tissue removal.  They agreed, and ran over how they would do the procedure. 

At 11:00am, I signed the most difficult piece of paper I have ever had to sign.  Katy went in for surgery in the afternon, and was there for 2 1/2 hours.  We met with the doctors post-op and learned the results of the exploration.  The amputated Katy’s left hand 4 inches above the wrist, right hand 2 inches above the wrist, her right leg 4 inches below the knee, and her left leg 6 inches below the knee.  There will be a follow up procedure on Monday to determine if they need to remove more, or if they can reprofuse the tissue that is there.

Katy is still considere very critical, and is by no means out of the woods.  I made this decision (in part) based on the fact that her kidneys are starting to produce, she was breathing on her own for 12 hours, and that she is showing signs of mental alertness when not sedated.  She still needs all of our prayers.  The road to recovery will be a long and hard one.

I hope that everyone will understand why I did this.  I hope that Katy will forgive me.  I hope that I can forgive myself.  I am going back to see her tonight, and then I will be back first thing in the morning.  I know that I speak for Katy when I say that WE love you all.

Al

My current state of mind….

I want to start off by saying that I am sorry for not replying directly to most of you.  I have read EVERY e-mail and post, and I have researched and taken into consideration them all.  I have had so many replies, through all the various communication channels, that I couldn’t possible answer them all.  Thank you all for taking the time to send me the info.

I’m at a loss.  There are so many decisions that are being pushed at me, and no where near enough answers to the questions.  Unfortunately, the time frame before Katy starts going backwards is rapidly approaching, and I am flying blind.  So many of the options would require a miraculously quick response from individuals and organizations that might be able to help. I have contacted the case managers for 3 hospitals, put all of my questions before the current doctors, and researched several dozen websites.  I am not sure why the move to Dallas was made.  I was led to believe that Katy would have treatment options not available to her in Houston, but I am not seeing that to be true.  I now feel that she is recieving the same quality of care she would have gotten closer to home, and that the move was a lateral one at best.

The time frame for something to occur is 48 hours.  If nothing happens in that time to sway the options, in one direction ot another, then I have to concede to the amputations.  I, in my heart, do NOT want that to be the case.  I asked the doctors for at least one alternative to the surgery, and they, as of yet, have been unable (or unwilling) to offer any alternatives.  This is 100% unacceptable to me.  I have suggested hyperbaric oxygen, uv, removing the clots, blood thinners, physical stimulation, hydro therapy…none of which they are capable of or willing to do. 

I’m sorry to vent in an open forum, but my mind is racing, right now.  Sleep is not going to come easy, but I need to be rested so that I can advocate for her.  Please send any suggestion to  alhayesmusic@yahoo.com.  The hospital does not offer wi-fi, so my phone is my only source of outside contact while I am there.  Say a prayer for Katy, and another that I make the right decisions.  I need all the help I can get. 

Al

The last meeting I had with a doctor (tonight at 8:45pm), have them ready to perform amputations on both arms below the elbow, and both legs below the knee.  I have suggested hyperbaric oxygen therapy, but they don’t seem ttoo receptive.  Dr. Shire did say they would help me find one, but that if Katy leaves Parkland, then they won’t guarantee her bed at Parkland.  The doctor feels that the necrosis in her extremities might be feeding the infection.  I have not given permission for the surgery, but time is running short.  Do you have any suggestions?  I am grasping at straws here…but I need something.  I have 48 hours before I have to OK the surgery.  I feel like I’m damned if I do….you know the rest.

Al

Thursday morning news….

I met with the night nurse this morning and I met the plastic surgeon Dr. Unger.  They changed her bandages and are watching her vitals to get a baseline on the numbers.  I went back and met with the day nurse.  Katy was running a 103 temperature, and they were trying to break the fever.  They are trying to break the temp without using cooling blankets because the cooling blankets irritate the skin. They have re-sedated her due to the pain she is feeling.  I am not going at 11am due to them wanting to change herbandages and look at the wounds.  I will meet with Dr. Ronaldo this afternoon to discuss the treatment plan.  I checked in to the Super 8 2 miles from the hospital.  The nurses suggested that I be close due to them needing my input often, and needing my signature at all hours of the day and night (they called me at 1am asking if I was near…)  Anyway, I will post again this evening.  Thanks, again, for your support and prayers.  I know they are working.  I have been relaying all of your messages to Katy…I know she hears me.  I’m going to try and get a little rest while I have the chance. 

Love,

Al

I just got the call….

Katy is up in the burn ICU and has been checked in.  They are treating her with silver-dine (skin antibiotic), and she is resting well.  I am getting up early to be there at 5pm.  I was a little mad when they asked if I was in the hospital.  They had told me to leave earlier due to them locking the doors at 8 etc….then the nurse said “well if you were here we would let you see her.”  I was pissed!  Oh well…I will get to see my Katy in the morning.  I just have to wait another hour so that they will call me and we can do the paperwork over the phone.

Al

Dallas 2/24/2010

Katy was moved to Dallas by plane.  I got a call from the EMT’s in Houston reporting that she had been put on the plane.  I drove to Dallas this morning and found the hospital and hotel.  She will be admitted to ER, given a “workup”, and then moved to the Burn Trauma Unit.  I won’t be able to see her until tomorrow (very tough for me), but I met the nurses, and let them know what level of information I expect!  I will report more tomorrow.

Thanks to all of you for your help!  Mad cool award goes to Leslie for finding a Mom’s group up here to help me out.  I am staying with my dad in a hotel in Plano (my step mom just had major back surgery, and he will be here for a few days), and will look for a hotel closer if I need to be more available for Katy’s treatment.  Visitation is very limited, and they have all kinds of rules, so I won’t be sleeping in the lobby of the ICU! 

Thanks, again, for all of your love and support. I will post more as time allows.

Al

2/22/10 Morning Update

We had our morning meeting with the doctor and nurse on duty. She is still showing consistency with regards to her vitals, though we still need to see her heartrate come down. The DIC seems to be one of the major inhibitors in making any major progress. For those of you who don’t know, DIC is a condition in which the blood thins and clots simultaneously. This makes is almost impossible to treat either problem without risking increasing the other. A real life catch22.

 We talked about the ventilator, what the parameters were for weening her off, trachiostomy (spelling?), etc. She is having an eeg (brain scan) today, but the results will take a few days to be reviewed. There is (pray for it not to be so) a chance that she had a stroke while in coma. They have no way of knowing until they can CAT scan her. There is a possibility of that happening in the next few days.

 Katy is now on “drop isolation.” Simply put, no one but immediate family, and then with gowns, masks, gloves, etc. The family is even limiting contact (except me), so that we can limit the possibilty of outgoing contamination. If you would like to come visit me, and send prayers to Katy via the waiting room, please come at 9am, 5pm, and 9pm. I am here most of the time, but I am having to run and do errands that only I can do (birth certificates/ssn). I am off to deal with the courthouse, but will be back soon. Thanks, again, for all of your love and support.

Love, Al

Today’s News

2/21/2010

        Katy had a chest x-ray done today, and we are waiting to see the results.  Hopefully she will be able to switch from tube to mask soon….no guarantees, but we are hoping.  Dialisys went well.  She has been responding well to the treatment.  Her heartrate did elevate a little, but that is probably due to them pulling of fluids and the process of being moved for cleaning, xrays, etc.  She is still off of the pressors (going on 60 hours!) and that is paramount in this process.  Violet (nurse) explained the process by which they are cleaning the skin, and I am happy to report that her back looks promising.  Though all of these things I report every day are good, they by no means should diminish the fact that katy has a LONG road to recovery.  Simply the act of being in the hospital bed for this long has ramifications.  I feel confident that we will be able to cross all bridges as we come to them.  That being said, in my mind, the first process ends and the second begins when Katy is concious enough to be an active participant in these decisions. 

     THANK YOU ALL SOOOOO MUCH!  There are not words in any language that can express my gratitude to all of you.  Your support, efforts, friendship, and prayers are allowing me to concentrate on being Katy’s advocate, caring for my children, and looking over every doctor’s shoulder!  Speaking of children, thanks to Michelle Dykstra for her amazing job with Arielle.  I am proud to report that my daughter is fat, happy, and spoiled…..and GORGEOUS!

    In dealing with this very dificult time in my family’s life, I try to think of how Katy would handle this if she were in charge of this.  Katy would want us all (including me) to try not to lose our smiles in the dealing with our pain.  In fact, Katy would say that our sense of humor is what will allow us to survive the most painful of situations.  Please make sure to tell all the people in your life how much you love them…even if you are mad at each other.  You never know when……

I love you all,

Al Hayes

Arielle Update

Aunt Betta, Uncle Thom, Nonna Tina and Nonno Ike visited Arielle and Michelle last night. Arielle is doing so great under Michelle’s excellent care. She showed us her beautiful smile and dimple.

Arielle’s birthday video

Katy needs your love

After the joyous addition of their daughter, Arielle, Katy Hayes experienced intense pain and went to the local hospital. She is currently at Kingwood Medical Center battling for her life after a series of complications resulting from a Streptococcal A infection. As a result, Katy has experienced multiple organ failure and is unconscious. Surgery Monday night involved the removal of several sepsis organs. She is currently on a ventilator and receiving dialysis. Katy has a long road to recovery.

Residents of Kingwood for nine years, Katy, her husband Al, and their three children, Amber, 16, Jake, 5, and Arielle, 7 days, currently reside in Greentree Village. Both self-employed, Al teaches music and Katy is a massage therapist. Whether you know Katy or not, know this: she has a great laugh, a quick smile, a warm touch, loves animals and is as down to earth as you can get. She’s active, hard-working, very devoted to her husband and children and a friend to all who know her.

Surrounded by family and supported by an amazing group of friends, the Hayes family has been overwhelmed with the outpouring of meals, childcare, phone calls, housekeeping, groceries and visits. Their financial need, however, is and will continue to be tremendous.

Donations can be made through a link on this site.

To assist the Hayes family in their time of need, Kingwood Mothers of Young Children http://www.kingwoodmoyc.org a local nonprofit organization is seeking community support. A checking account has been set-up for the family, with funds raised directed towards rent, utility bills and other monthly expenses. To make payment via PayPal enter KatyHayesFund@yahoo.com or at any Chase Bank branch (account #871725040). Donations of gift cards and baby supplies can be dropped off at Merry-Go-Round, on Woodland Hills, or Bella Beads, on Atascocita Road, the official collection sites for Katy and her family. Please give what you can; any amount will be greatly appreciated. You can donate with a credit card through the PayPal link.