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.

Tuesday, November 24, 2009


My apologies for missing a blog entry yesterday. I hope it didn't worry anyone unnecessarily. I got wrapped up in financial stuff and just wanted to spend time with Tyler.

Happy Thanksgiving.
It is obvious what I'm thankful for this year....that this year is is almost over! ;-) The year started off with ELE (his cat of I think 11 - 13 years) being killed. Then I had my cancer surgery and chemo. Then Tyler's heart attack. I know it goes without saying, but I am so thankful I can talk to Tyler again even if it is about the long road ahead. I'm thankful that Tyler and I continue to survive life's biggest challenges that can be thrown at us. Talk about a reality show!

Tyler continues to make progress and I continue to tell the story of what happened. Or try to. Tyler is visited by so many nurses and doctors it truly is like a revolving door and it is frustrating to both Tyler and me. We get to a heavy part of the story and another person walks in. Also, each different doctor (who has a different specialty) is telling us different things and we keep trying to adjust to new information. Tyler is very determined to get up and out of bed, but something is going on with his right lower leg. It is a large cyst in his calf muscle that is putting pressure on his nerves and his is going to have surgery once the cardiologist determines when he can have it.

Tyler's mini-laptop came in and I'll be taking that to him today. He'll be able to be more connected and the next post you see on this blog could be from him. He is still working at getting his strength back and eating more. He was able to sign his name on some documents so that I can continue to hold things together. His meds keep being adjusted and he also is having problems sleeping. Our next goal is to be able to get him in a wheel chair so we can at least go outside for a little bit for some fresh Houston air (sarcasm intended).

The biggest thing he is struggling with is what has happened and dealing with this new reality. He commented how unreal this was and how he has a new appreciation for what Kelley went through. He is very homesick and getting tired of being in the hospital bed and he is also becoming overwhelmed by all the information coming in and decisions that have to be made. More importantly, he is becoming overwhelmed by the support and love from his friends and family. He has read through the e-greetings that have been sent so far and will be reading the blog and blog comments soon. I hope he understands that there is a reason he is still alive and continues to improve, that there can be a decent life with the LVAD, and that someone with this many friends needs to be around to see just how much he is loved. We continue to talk to the transplant social worker as Tyler tries to digest all that a transplant will entail. We keep getting mixed dates about when he may be able to get out of the hospital and when we could take a trip to visit Denver and when we would have to come back to Houston. All depends on how quickly Tyler recovers. We both have to go to a LVAD class that is mandatory, go on 3 or 4 short "outings" from the hospital, and he has to be able to walk around the 12th floor six full laps before he can be discharged. Once he is discharged I'll have to stay with Tyler until someone else learns about the LVAD. One funny side note is that I was being shown how to switch the controller's cords from the Power Base Unit (beside unit) to batteries as Tyler was being transported to have an ultra-sound and CT Scan. The nurse made a point of how important it was to always have the backup controller and batteries. After they took Tyler away, I was leaving his room and noticed the transport nurses had left the backup controller and batteries. I saw his nurse in the hallway and told her about it. She couldn't believe the transport nurses forgot to take it and I said, ".....okay, that is one demerit. Better not be another."

We are both now struggling with what the future will bring, both start thinking about the long term future, and then try to remember that the only future we can really deal with is the next day. As we struggle to try and get back some normalcy, we are also trying to still make sense of what has happened and where we are headed next. The biggest struggle is making sure I can still work, that we can keep the house, and where we will be living in 2010....Houston or Denver. These decisions will work themselves out but both Tyler and I are very anxious. I'm starting to get angry at different things that aren't really the true sources of my anger. Just going through the anger stage every now and then. Tyler will hit these stages also, but has already commented.. "how could I be mad at anyone for making this decision for me." He understands the situation we were put in and while he struggles with this major adjustment, he knows the decisions made were out of love. I've also told him about the struggles we went through in making this decision for him. We wanted Tyler to be able to have a good life again and made the best choice based on the info we received.

It sounds like the fund-raising event on December 6th is coming along. Many, many thanks to everyone that is donating items for the raffle and that are planning on attending. I've told Tyler about this and it makes him and I cry to know how much support we are receiving. I truly hope that this is good karma coming back to us.

I hope everyone has a good Thanksgiving and that this blog has not been to overwhelming for people to read. I'm truly looking forward to Tyler writing on this blog and things finally calming down enough to spend actual quality time with Tyler.


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