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.

Monday, November 16, 2009

More on the first week

I'm trying my best to write the events in the order they happened but am missing some things. Most important, his family arriving.

His family arrived on Wednesday, October 28th. I was able to get them up to see Tyler even though it was outside of visiting hours. His family and I quickly had to learn each other on a different level than we had known before. We all have Tyler's best interest at heart and were trying to work through all of the information we were being given. We finally had "the talk" to decide together what we thought the best decisions would be. We even signed and made copies of the decisions we had made so that as things happened further down the road we could refer back to when we were the most logical we could be during this. I went to confirm our understanding with one of the nurses and one of the doctors. The doctor said we were being extremely reasonable, even though there were never right or wrong decisions necessarily. (I like this particular doctor a lot. He has always kept me in the loop of things and been patient when asked the same question over and over. But, I haven't seen this level of CYA (cover your ass) ever before and I worked in a banking institution for 4 years.) The nurse explained that the family was "literally" on the same page and I showed him what we had signed together. His jaw truly dropped and he kept saying, "no one ever does this, no one ever does this!". He thought under the circumstances we were doing very well. We would be reminded of this 'signing of the paper' story a couple of times by the St. Luke's staff.

At one point during the first week I was there, I noticed his mother patting his arm. I mentioned that only a month or so ago, Tyler had hugged me and was patting my back. I asked Tyler what that was all about and he said "...that is how my mother did it". Of course I meant this in the best way and his mother started to cry. I looked up at the nurse at the foot of the bed and she was tearing up also. I asked Barbara, the nurse, if she was okay and if there was anything I could do for her in her time of need. This broke the sadness a bit.

During this time we were also trying to figure out how to legally deal with things since his family would need to get back home and I would be in Houston. Without a power of attorney from Tyler the only option was to petition the courts in Houston for guardianship. A very expensive and long process. I finally harassed enough people at St. Luke's to find out that any legal consents needed could be done by phone with his parents. His parents decided they would stay until I got back from Denver. They ended up staying for almost two weeks after I got back.

We started to meet a lot of the St. Luke's staff that would help guide us through this situation. Did I mention how surreal this still is? Besides the nurses and doctors, we met Stephanie (transplant social worker), and Mary (hospital chaplain).

Trenton and Temple found the Blood Bank at the hospital and gave blood before leaving. They also began discussions with Kelley about fundraisers. Bless them, because my head was beyond thinking about that stuff. The night after the meeting with Stephanie (in which she discussed all that we were facing), I looked at Kelley (she gracefully got a room at the Marriott for both of us) and began crying and saying I just wouldn't be able to handle all of this. She kept saying I would be able to handle it and I agreed, but I just need to release some of the fear. I was beginning to realize how long and hard the road was going to be for Tyler and I. I also started to understand that I wasn't going to make it back to the resort with Tyler after all.

Tyler's parents had met Mary, the hospital Chaplain. She prayed with them and she also introduced herself to me. Told me if I needed anything to let her know. I just kept saying that I would get in touch with her someday if I needed anything, blah, blah, blah. I didn't think I was going to need to talk to a Chaplain. My spirituality was intact. I'm logical. Thanks, but no thanks. That changed one morning during a melt down. I was standing next to Tyler's bed and just began to cry those heavy tears again. Tyler's mom came in and saw this. I noticed the look on her face and I kept saying ... "he's fine, he's fine, it is just me". His mom hugged me and cried a bit with me. At this point I grabbed Mary and took her to go talk. I talked to her for about an hour and it was a good counseling session. God/the Universe was sending me what I needed, when I needed it.

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