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
Al, EVERYONE should take a lesson from your diligence with knowing what is happening with Katy’s care. It is sad that your attention to detail is the exception instead of the rule.
Al, you were floating you know, that is why you did not feel your legs at the wedding. Yep, walking on air. 😉 I also remember your bee-u-tee-ful flower girls and those handsome ring bare-ees! And the pre-wedding hair trims and the incident involving involving Katy’s foot and a heavy object and a bunch of ice and Arnica… But like magic, her foot was perfect the next day and like Cinderella, the glass slipper fit. Setting up the decorations assisted by the Lovely Leander Wind while the kids caught frogs or at least pretended too… What a beautiful weekend.
I look forward to your post that says, “She’s HOME! Katy’s HOME!” and there will be hearts across the country dancing and bursting with joy.
JenN
Al, I’ve been reading your blog since you have been writing it. I also read the comments & as you know, we all think you are a wonderful husband & father. What I am amazed at is your persistant, diligent & will not & won’t give up on not only being there every day, but write to all almost every day to all of us who care so much about you, Katy & your family.
I am happy that you had a “break-through” with the doctors. I understand; I have been there…very, very frustrating! Now, we all will pray that you get more answers & information that you need to take care of Katy.
You have made a difference! This is what I have done with the doctors, nurses & hospice at the nursing facility where my 86 year old Mom is; they can’t believe I call, I want to know…know everything. I live in Kingwood & Mom is in Ft Worth. They are amazed because this is not the norm. It is my sole responsibility to make sure Mom is OK & they are doing what they are suppose to do. I will never give up; she deserves it as Katy does!
Don’t ever think for a moment that we are all notl out here praying, praying, praying for what you do everyday & for Katy’s complete recovery! I pray angels around you both everyday!
Sending God’s comfort & peace to you both!
Nancy
I just want to say to you this evening: Al, do you have ANY idea how special you are? Do you have any idea how amazing YOU are?
Well, YOU ARE!!
God bless you, young man, and you be strong and carry on just the way you have been going, because many of us readers and prayer warriors are in absolute awe over your stamina, positive energy and your determination.
Big bear hug from Montana
Al,
Thank God Katy is getting better!
What a beautiful memory … your wedding day, I often think of it and remember many lovely details. I recall your trailer that we all stayed in and how well kept it was inspite of all the people. I remember helping to prepare the food when Katy hurt her toe, getting ready with the others and your reception in the park.
I often recall the “Yee haa!” Katy exclaimed after you two were pronounced husband and wife and you both went down the aisle arm in arm.
I remember how beautiful she looked that day. I am very happy that you have made her a happy lady and that you are a very good father, an adventurer and her best friend. God Bless you for loving her so well. God Bless your family.
What a sweet story!
Glad to hear Katy had a good day today. I agree with you that I cannot imagine anyone not wanting to know every single detail about what is happening with their family member while being treated in the hospital. You are doing all of the right things for all of the right reasons. As I have said before, Katy is very lucky to have you. You are wonderful! Here’s to another good day tomorrow, one day closer to Houston.
Jen
i looked up cassette on wikipedia. it said “albert you’re so old, some mistake you for a dinosaur”
nuff said. 🙂
Thanks for your news and wedding day stories. Much love from the Milner-Nichols households, Susan
Al:
I have been following Katy’s progress and have smiled and cried right alongside of you (at times my husband would try to take my blackberry away so I couldn’t read….Katy’s desire to beat this along with your wonderful devotion to her is so moving).
Anyway, I just merely by accident happened upon a website that I thought you may be intersted in. I have no affiliation with this site and you may already know of it. It is a charity organization that assists with prosthetics for those who cannot afford them. http://www.limbsoflove.com/
I hope I am not out of line by offering this information to you, I truly am only trying to help.
Blessings to you, Katy and your family!
Sandie Bass
We drove by Georgetown & the square yesterday & we thought of you two. We always do! 🙂
Love,
Laura
Hey Al,
I do want you to know we are thinking about you guys also. The kids and I went to Sam’s 3rd birthday party last weekend and it ached me thinking about Katy being there last year with us! So I made sure we all made it and held Katy in our hearts!! I love your blogs so much! I share them with a few people here in my office and like everyone else we are amazed also!!! I CAN’T WAIT for you guys to come home either!!! Definitely something to look forward to with excitement! Love you guys so much~
Cherie’
Al
You have an amazing gift of telling a story. Has anyone ever told you maybe your calling was to be a writer. Glad things are still on a positive note. God is good – Never on our own time table which strains so many people’s relationship with him until we realize the lesson – Patience – its obvious that you do not lack in this department. Thinking of your whole family. McCalls
So glad Katy is doing better.
We’re still praying…..
Hi this is an article about a 15 yr old who had both arms and a leg replaced w/ artificial limbs via shriners
Teen from Ecuador receives new limbs from Utah hospital
January 28th, 2010 @ 9:45pm
By Ed Yeates
SALT LAKE CITY — A courageous teenager from Guyaquil, Ecuador, is back in Salt Lake City to get another new set of arms and a leg.
Victoria Salcedo Portocarrero is just like any other 14 year old. She may have lost her arms and a leg in a near electrocution nine years ago, but that’s not about to hold her back — especially since a festive cultural celebration is waiting for her later this year, one set aside in Ecuador for every teen when they turn 15.
“Victoria has moved ahead with a great deal of courage,” Victoria’s mother, Beatriz Portocarrero, told KSL News through a translator. “She’s been very courageous. She participates in all activities. She’s very much alive. She involves herself with her friends.”
Victoria comes to Shriners Hospital in Salt Lake every 18 months or so to get fitted for new artificial limbs. While here, she stays with Shaun and Christina Myers — Christina acts as their interpreter.
Victoria’s story
When Victoria Salcedo Portocarrero, 14, was six years old she lost both arms and her left leg when a metal pole she was playing with outside her home in Guyaquil, Ecuador touched a high-voltage electric wire. She was introduced to Shaun and Christina Myers of Ogden in 2005 when the couple was in Ecuador for humanitarian work. The couple helped Victoria get to Utah and Shriners Hospital for Children agreed to cover the cost of the limbs. Victoria was first fitted with prosthetics four years ago and has returned several times for her limbs to be replaced or refitted.
The prosthetics are pretty basic, but Victoria dreams of a day when new generation limbs might allow her to do as much with her upper body as she now does with her foot and toes.
“I write, I paint; when I was younger, I played with dolls and toys,” Victoria said. “I can use any kind of apparatus or machine or computer using my foot.”
Victoria is an example of how kids often adapt to challenges. She can empathize well with the victims of Haiti’s earthquake — all those who’ve lost limbs there.
“Many of them, she knows, have lost their parents, and many of them may be sent to orphanages to be left there without their limbs — a difficult road ahead of them,” Christina said.
Shriners Hospital makes prosthetics all the time, and now it may be doing even more for young people in Haiti. A few victims of the earthquake may come here to receive limbs, but there will need to be a more permanent solution in Haiti.
“Especially with the kids, they’re going to need consistent replacements. They’re going to have to have some facility down there to keep everybody going,” said Pete Kapelke, who works with prosthetics at Shriners Hospital.
Shriners Hospital in Salt Lake alone makes 300 to 400 prosthetic limbs per year, with another 3,000 orthopedic braces. The service works well for hosted kids like Victoria, but what Haiti will need down the road goes way beyond this.
Victoria returns Friday to Ecuador. She will celebrate her 15th birthday in what is called a ” Quinceañera” 10 months from now.