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
Al,
I go to church with Michelle. I saw you sweet little angle in church today. She has the most beautiful smile!! God’s peace to you and Katy. Sancy Rhodes
Al,
Carl and I have been following Katy’s condition and have been thinking of you both. I know the community here in Kingwood is doing all they can to help. Once you come home, I know Katy will have a long road ahead of her in rehab and Houston has some of the greatest facilities just for that. It sounds like you are looking ahead and making plans, which is good. I wondered if you were familiar with Muillenburg Prosthetics here in Houston? It’s another resource, possibly. Also, I have been thinking about your current mode of transportation and wondering if you have a van that can be adapted with a wheelchair lift? If I remember correctly, you used to own a van. As an occupational therapist, I can’t help but think of things “down the road” and wondering if maybe we could help in these areas.
Well, I smiled when I read your jeep adventure at the slabs. It’s been one of my favorite places since I was a kid. I spent many a summer with “road rash” after sliding down the granite and rapids all day. In fact, I just returned home from our cabin at Inks Lake today. A little cold for the slabs just yet.
We think of you and Katy every day. Know that the community is doing everything they can to help. Please know that we are here and when you come home we will help in anyway you need.
Love,
Wendy and Carl
Hi Al,
You and Katy have shared so many wonderful times together as you have such adventurous spirits. I have faith that your adventures will continue with the determination that you also share. I have been wondering lately how advanced voice activated computer technology has become. I hope that it can be a help for Katy. It is good to hear that Katy is showing some improvement. You all are in our thoughts and prayers. Our daughter Cathy and her family are visiting us in Florida (Katy’s cousin) and we are all sending good energy for all of you.
hi al,
it’s one of the distant cuzins—have been a nurse for 30=YRS,have specialized in wellness/nutrition for the past
9yrs–the expert who i learned from & who taught the drs
in charlotte,nc–is Nutritionis, wendy ruple-call her tollfree
@ 1-866-548-9955,referred by me–
when my mom surgery-she developed a fever due to
cdiff that occurred from good bacteria wiped out by antibiotics–as soon as we got probiotics back in her, the fever broke & she began to recover slowly…may want
to ask about powered probiotics.. debbie barna
Al,
I am one of Katy’s friends from MOYC, and I wanted to share a story with you.
My daughter was born with as a congenital right arm amputee. Her right arm ends at her elbow (she doesn’t actually have an elbow joint) and she has no right hand. We didn’t know about this problem before she was born.
After she was born, for the first few months of her life, I was constantly thinking about the things that I thought she wouldn’t be able to do…crawl, ride a bike, play a musical instrument, etc.
What I have found out in the 8 years since she was born is that it is a person’s spirit that determines what they are capable of doing. As a baby, she figured out a way to crawl commando style across the room, while she still uses training wheels on her bike — she LOVES to ride her bike, and is almost ready for the training wheels to come off. She doesn’t play a musical instrument, but she loves to sing and dance.
We got her a prosthetic “helper hand” when she was 3 1/2, but it seemed to only get in her way.
I have tried to learn to stop looking at things from my perspective of having 2 hands. My daughter doesn’t necessarily do things the same way everyone else does, but she doesn’t let her lack of a left arm and hand keep her from doing something. If she REALLY wants to do it, she will find a way.
I know that Katy has this same kind of spirit. It will be hard for you to watch her struggle, and watch her get frustrated sometimes, but if she REALLY wants to do something, Katy will find a way.
Our love and prayers to you guys!
Suzanne
Al,
I, too, can not do anything anymore without thinking of how Katy will do this or that. I know where there’s a will, there’s a way, but some things are hard to imagine. I hope you putting this out there will bring in ideas & help from those who have been there.
I hope Katy’s fever goes SOON & you can enjoy this week w/ friends and family.
Love,
Laura
Hi Al,
I heard about Katy through a friend and patient of Katy’s and I’ve been reading with sympathy and interest. It’s awful and inspiring at the same time. My heart goes out to your family.
I had a thought come to be about her fevers and how her fever goes down after a bath. While there is the issue of her body not being able to release the heat, I also wonder if the baths are calming her down. She used physical touch to heal others, so perhaps it is very healing for her to have that care given to her as well.
While she may not be conscious all the time, her body is still very aware of what’s happening, sort of like it has its own intelligence and the physical touch probably make her body not feel so isolated. I don’t know Katy personally, but I suspect that she was always in contact with someone (people, animals, nature, whatever). Because of her situation, she probably spends most of the day ‘out of touch’.
Anyway….I’m no expert, and you’ve most likely already thought of this, but felt compelled to mention it.
With love and respect,
~Kristin
What beautiful and exciting adventures! I know you will fill your lives with more.
Internal thermo-regulation could be the problem with the temp? I’ll be praying for continued healing.
Katy’s new life will take much getting used to, but she will devise new systems for coping and making her way with this disability. I am sure that technology will also work to her advantage for better disability equipment and prosthetics.
I am available to be a part of her support team when she returns home if you need. I know that initially she will need the most support for her own needs, but also the baby and little Jake, especially in the times when you are at work and Amber is in school.
Certainly Katy cannot wait to be with her children again and love her new little Arielle. I have thought of how a sling might be helpful for Katy to hold Arielle while Katy is sitting. No doubt Katy will want to hold her much. Katy will need support when she feeds Arielle a bottle. And someone needs to be there to help care for them preparing meals, changing diapers, cleaning up. I know Betta has been a fantasticly loving support as well as all of your friends.
I live in Atlanta, but learned about Katy through a friend in the Dallas area in a moms club, I think. 🙂
I am ALWAYS thinking of you all. I hope you are able to see your children, especially your new sweet baby! They grow up fast as you know and I don’t want you to feel that you don’t know her when Katy is out of the hospital.
My daughter was so sick last year and we had just had a baby in January. When Emmy passed away in December and we were finally all home together again, I felt like I didn’t know my little baby Anna Grace. She was 10.5 months old at that point.
I wish I was closer geographically to help you all out, but I pray for you all and think of you all the time!
Not sure if you have time to read, but there are two books of many that I’ve read in the past 4 months that are really great. I read them because I wanted to know more about death experiences, but these two are great stories about living and hearing God’s word and following the new path that he has laid out for us. 90 Minutes in Heaven by Don Piper and My Glimpse of Eternity by Betty Malz.
May God be with you all! Much love from GA!
I forgot to mention that you can read about Emmy’s story at emmysangels.blogspot.com and on that blog there’s a link to her carepage as well.
I agree with you that you need to bring the temperature issues that you are noticing up to the doctors! You have a special gift that the Doctors do not have and that is an open mind to the medical realm. You are not brainwashed or swayed to disregard certain things. Trust your instinct, you may not be wrong! Push hard for those things that bother you, you know best! You are not only a member of her medical care team, but you are the leader of that team with hiring/firing rights as well.
I know that you know this, but I always feel that I have to share that because it’s easy to forget that the doctors work for us since they act like the opposite.
You are doing an excellent job and you are such a hero!
Al, have you had a chance to look at the media items I sent through my mom? They will be very helpful as Katy continues to heal and gain strength once she is home. I could help with these preparations. Check it out if you have not had the chance.
Al, Thanks for the update. I’ve wondered too how Katy will carry and hold Arielle. I may have some things you all can use that I will put aside for you to look at. Andy & I have considered the more mobile life as well and how much more vital living life is over collecting things. Not to say that I don’t appreciate nice things….
Love as always, Susan
Hey Al! We are praying for you and Katy. We are also praying for the Dr. to be able to figure out the reason for her fever! that has to be so frustrating for you! It is amazing that you can remember all the fun times you guys have had together!! You have a lot of great stories and memories!! I think I need to start a journal so I can “remember” all of me and my families adventures and fun times. Hang in there!!
Love,
Whitney Yarbrough
Dear Al,
Thanks for the update. I really appreciate your jeeping stories. My husband Jerry and I have had many adventures both here in the mountains, and in Utah desert. As you told your story, many happy memories came back to me.
When Katy gets better, maybe our families could do some jeeping together.
I have been praying about the fevers. My children always responded well to baths with lavender salts in them. The lavender is very effective in bringing down fevers even on a washcloth wrung out in warm water. It’s one of those little blessings of God’s creation. I hope they will let you try it.
Sincerely,
Marti
Dear Al,
I was thinking about my recent comment to you about Lavender salts. Perhaps they would not want her to bathe in salt water. The most important part is the essential oil. If they could put only a little in her bath, it might make a difference. The first kind I used for my seven children was produced as an aromatherapy packet at the health food store. The second kind I used was from the Dead Sea.
There is a lot on the web about Lavender and its benefits. The one site I looked at did not mention fever reduction, but I know it to be true. What I noticed with my children is that the fever never returned. I do not know how it will effect Katy, but it is very healing to the nerves, skin, circulation, and repiratory system. Please check it out. I don’t know, but maybe it is an important key for Katy’s recovery.
Sincerely,
Marti
Al,
Internal thermo-regulation seems to have to do with hormones I believe. You mentioned Katy had a hystrectomy. Maybe they need to check her hormones and her thyroid. My sister once was on a medication that contained epinephrine, one of the hormones that helps with the regulation of body temps. She had too much epinephrine and her temp would rise. I think there are 3 hormones and many processess involved in the regulation of temp. Something just may be off.
What a great marriage and life you two have shared. So many adventures! Thanks for sharing with us. I continue to pray for Katy.