Tyler's Heart

Pictures - Pictures from Houston.
LVAD Video - A YouTube video about living with an LVAD.
HeartMate II Video Clip - Short video clip about the pump Tyler has.

Another good blog to read is from our friend Bill. Cozumel Part 1 - This Might Be Habit Forming.

Thursday, December 10, 2009

Off the Roller Coaster?

12/09 - 12/10
It has felt over the past couple of days that the roller coaster ride is coming to an end. Now, maybe we'll just try the tilt-a-whirl. Instead of up and down, we'll just try spinning in different directions?

Tyler continues to improve. Appetite is up, gaining some weight, looking better and his hand writing is getting better. He continues to have problems with his right foot that is swollen, numb on the bottom, yet still feels pain in his toes and on the sides of his foot. He received a blood transfusion of about 2-3 pints since he has gradually lost some blood and his red blood cell count was low. The nurses went through 6 attempts to get an IV into him and it was painful to watch. He told them the sixth time was going to be the last if they couldn't get it in. His veins are hard to hit now and it took a nurse from IV Therapy to finally get the IV in.

Obviously he is getting a bit grumpy with all that is going on. Wonder why? He had a doctor tell him that he would never be able to drive a car without hand controls, since he wouldn't be able to use the pedals. This upset Tyler a lot. But this doctor isn't a neurologist or orthopedic doctor or a physical therapist. Tyler has come a lot further than any of the doctors originally thought, so this is just one more thing to prove the doctor wrong. His occupational therapist also told Tyler that the more therapy he does the better chance of recovering the use of his foot.

He took out some of his frustration on his occupational therapist and social worker that were in the room. They took it in stride, but I did notice they left me alone in the room and went into the hallway to look at Tyler's chart. I reminded Tyler that these were the people who were helping us out the most. He took a deep breath (metaphorically) and then apologized to them when they came back into the room. This not withstanding, he still is not shy about staying in charge of his medical treatment which is a good thing.

While the social worker was in the hall, she motioned for me to come out into the hallway. She was concerned with Tyler's face and speech. I told her that he keeps getting dry mouth and the moment he takes a sip of water he is fine. She wasn't buying this and went to get Tyler's nurse, Greg. Greg came in and did a quick test to see if Tyler had (or was having) a stroke. He made Tyler move his head around, some other stuff, and to follow Greg's finger with his eyes. Then Greg shook his finger rapidly from side to side. Tyler just looked at me and said "...Greg is real funny once you get to know him." Made Greg and I laugh. Greg was able to find the medicine that has the dry mouth side effect and they were going to try and cut back on that.

Tyler has also met with the neurologist and a pain management team. He was told that it takes a nerve one month to repair one inch. He has 18 inches of damaged nerve to go. So in about 18 months we will know how much damage is permanent. It now appears that Tyler will move to another floor that is dedicated to physical therapy. This way he will get 3 hours of therapy time versus about 30 minutes now. Approvals have to take place but it looks good so far that he might be moved this coming Monday. I'm so excited as I haven't been on the 17th floor yet and just hate to think that we would finally go home and not have been on every possible floor and colored elevator that St. Luke's has to offer! Tyler was also able to walk around the 12th floor for 3 laps twice today. He started having more pain and numbness towards the end but this is a big leap. He also got into trouble for redecorating the room. He was moving around chairs and stuff because, like me, he can't stand the clutter. But he shouldn't be moving or lifting anything that is more than about 5 lbs.

Kristina, from the Rock Bottom past, sent me a contact at the University of Colorado Hospital. Yesterday I got in touch with Ann, the VAD/Circulatory Support person at the University of Colorado Hospital. Ann was really nice. She said we shouldn't have a problem transferring his care back to Denver. She called back asking for phone numbers for some of the doctors and staff and let me know that she had talked to the transplant surgeon already. The doctor even said..."is this the guy who worked at Rock Bottom Brewery? Of course we will take him." Whew! She is already putting the wheels in motion so that hopefully we can make it back to Denver. Maybe by end of January/beginning of February. At least that is the moving target we keep trying for.

Lucy is now in town and hanging out with Tyler. This gave me some time today to catch up with things. Called the mortgage company, did laundry, called the bank, cleaned the bathroom, had a business call, and did some work. Getting closer...

So, today was a good day. Yesterday was an okay day. But it seems the days are maybe (do I dare say this) leveling out a bit. There are still shocks that come in but I think our defense shields are holding up better. I'm glad we are on a tilt-a-whirl now. Now if we can just get back to the merry-go-round!


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