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.

Saturday, December 19, 2009

Home Sick

Sorry for the delay....everything is okay. Didn't mean to worry anyone....just a bit tired. Besides, I thought someone (who shall remain nameless) was going to make another post. He may be dealing with some other important things. Or maybe he is just a slacker. Ha.

Tyler is still hanging in there. Still working on getting his legs stronger. He now has a knee brace on his left leg due to his knee buckling. His right leg, the one that had surgery, is still healing and still giving off a lot of pain. Seems like his chest is healing just fine. They are trying to work on the pain meds, but it appears the Darvaset makes him nauseous. But all in all....holding steady for now.

I have been able to take Tyler out of the hospital in a wheel chair a couple of times now. We didn't go to far from the hospital, but was able to go to Starbucks and wheel around a bit. During one of the excursions Tyler said "Can you believe I'm waiting on a hear?". My answer "No". It is still surreal.

The LVAD coordinator came to Tyler's room Wednesday and went over discharge procedures with us. Yes, I said "discharge". If everything holds steady we should be able to leave the hospital next Wednesday! Finally! Of course the coordinator got frustrated trying to talk to Tyler and me. She was giving us a knowledge test to make sure we knew the important things about the LVAD and life outside the hospital (supplies needed, etc.). Tyler kept peppering her with questions and changing topics and I was being a smart-ass with my answers to her questions. "How long does the internal battery on the power module last if there is a loss of power?" My answer: "Well, if we go by the manual that we were told to read, 30 minutes. If we go by what we have been told, 15 minutes. Guess it doesn't really matter as we will immediately switch to batteries and find power somewhere else." She counted our excursion on Wednesday as our 4 hour pass and when I get back to Houston, I'll take Tyler out for 8 hours and we'll be done. The coordinator was very nice in that she will be out of town next week and wanted to make sure she had signed off so we could be out of the hospital before Christmas.

His mom and sister flew into town on Wednesday. His mom just popped into Tyler's hospital room unannounced. At the time Tyler and Temple were standing up talking and it was great to see his mom's reaction to that. The last time she saw Tyler he was barely conscious and unable to talk. They are now entertaining Tyler (okay, helping Tyler), while I take a trip back to Denver. I'll be able to do some business, get some things for Tyler, and deal with the mounds of bills and statements at home. We will still have about another month or two to be in Houston but at least we are taking another positive step. Still working with the University of Colorado Hospital in figuring out how to transfer care back to Denver, so our 1 to 2 months doesn't turn into 6 to 8 months or more in Houston. Once we are discharged, we have once a week clinic appointments (to check on the pump, etc.) for about 4 weeks and then the appointments become once every two weeks for about another 4 times. Depends on how Tyler is doing as to how long this will take. He is also scheduling out-patient cardiac rehab during this time so he can get stronger.

Being in the house without Tyler is weird. I've had a couple of moments where I expected Tyler to be here or to come back from a client appointment. Tyler is homesick but said he was glad I went to Denver to check on things. Most, if not all, of the other LVAD patients have been discharged so Tyler doesn't have his buddies to talk to when walking around the floor. Kinda lonely.

We still have a long way to go and that is not even including waiting for a heart transplant. Hopefully in the next two months he will become active again on the transplant list. Although...the nurses are now able to take his pulse without using the Doppler method. Hopefully a good sign that his left ventricle is pumping better. Fingers crossed!


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