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, November 12, 2009

Unstable to somewhat stable - 10/27 - 10/31

Tyler remained in the Cardiovascular ICU into Tuesday (and is still there). Dr. Scott Sherron and two nurses got Kelly and I and took us to a room. We both knew this can't be good. The doctor explained that Tyler was still very unstable and his heart was racing back and forth. At this time I told the doctor that he needed to call his parents directly since they would need to sign consent forms.
After the doctor talked to Tyler's father, he looked at Kelly and me and said, "You need to get out of the hospital". I knew what he meant but couldn't resist saying, "Wow, you are kicking us out already?!". The doctor at first was shocked but then realized I was joking and laughed. They left us in the room waiting for an admitting nurse and that was when we both broke down. It was a hard but good cry. We picked ourselves up and kept dealing with the issues we needed to.

We finally were able to see Tyler and his nurses. His bed was in what I call a cubicle room. While standing there I started to cry again and the nurse asked if I would be all right. My comment was .. "I did my part, now it is up to you". The staff at St. Luke's is beyond wonderful and I immediately felt that they would be the best to help Tyler.

Over the next few days, we continued to visit his bedside and got updates on his condition. Besides his heart all other organs were doing very well. The main comments from the nurses was about how strong a fighter Tyler was. He kept trying to wake up from the sedatives and sit up. By this time he had a tandem heart in place which meant he could only move about one inch before dislodging the tube running through his heart. One nurse even made a comment that she was to old and small to try and keep Tyler pinned down. They had to put him on more sedatives and paralytics so he wouldn't move.

At some point a doctor came in and made a comment that a decision might have to be made in the next 24 hours to implant the LVAD. His parents were preparing to come to Houston at the time. Kelly and I quickly asked pointed questions to understand what this would mean for Tyler and his quality of life. We finally came to the point that I had gone through cancer surgery, she had no use of her legs, and Tyler would just have to deal with an implant. The last thing we wanted was for Tyler to be stuck in a hospital bed for the rest of his life. Fortunately we ended up having two more weeks before that decision had to be made.

The rest of the week we kept checking on Tyler, meeting new nurses, and trying to update as many people as we could. One nurse finally commented that we needed to realize that we were still in shock and would be for many days to come. At this point I started relying heavily on DJ to take care of the house and coordinate things in Denver.

I was told by the nurses that if I need to go back home to take care of things I should plan to go very soon. Tyler was going to be sedated for quite a while and if I waited I would never get back. It was with the heaviest heart I've ever felt that I went back to Denver that Saturday. I was at the hospital at 3:30am for one last visit and never felt such heavy tears fall from my eyes. I finally said good bye and slowly made it back to the hotel. I called a friend, Michael, on the east coast (and woke him up) just to talk. Kelly and I made it to the airport somehow and basically drifted through as we had been doing all week. We looked like hell.

Denver had a major snow storm while I was gone, but DJ shoveled out the house before I got back. Another friend, Jim, had also stopped by with a shovel to help, but DJ had already finished.

I got back to Denver and DJ picked me up from the airport. We were headed home but I decided that I needed something to eat. We went to Sloan's Grill in Edgewater. As we passed 29th Avenue (down the street from the house), I asked DJ if he knew what I was doing. He knew I was avoiding the house for a little bit. DJ and I had lunch and finally went to the house. It was so good to see Toby (beagle), Bowser (lab), and Max and Marlow (the cats). I was still in a mode of getting things done since I only had 3 days to get ready to go back to Houston. I avoided really looking around the house because I knew I would feel an emptiness. Neighbors came over to check on me and Dane and Diane Doyle showed up to figure out how to help me out. Bernie and Jim helped the next day repair the fence that Bowser destroyed and tighten up the kitchen sink faucet.

Over the next three days I just kept busy trying to get everything together I could and pack what I would need. One problem was that I didn't know how long I would be gone and didn't know if I would need to pack everything possible. Finally (with direction from DJ) I started to pack. Being at the house wasn't to bad since I was always exhausted by the time I went to bed. One day, around 9pm, I finally decided that I couldn't do anymore that day and would watch a little TV. It was at this point that an odd guilty feeling came over me. There was just so much to do and I was going to watch TV? Tyler was in Houston fighting for his life and I was going to catch The Daily Show? I talked this over with Dane. I felt like I wasn't thinking of Tyler enough. Dane graciously explained that everything I was doing every moment of the day was for Tyler.

Towards the end of the first week in Houston and back in Denver I had decided on a 100% honesty policy. So many people were asking what they could do and I was being honest with them about what I needed. I never held back any requests and also felt I was leaning on DJ and Dane very hard. My business partners were working very hard to keep control of the business and met me Monday so I could transfer things to them. Everyone who stopped by or called got a request from me. Nobody refused. All of Tyler and my friends and family continued to be extremely supportive. Those that are able will eventually be able to come to Houston. Those that can't can help me with things in Denver. And everyone can continue to think, pray, and mediate about Tyler for his well being.

I was able to walk Toby and Bowser a couple of times while I was at home. I kept thinking I didn't have the time, but it was very good for me. By the second night all the critters were sleeping in our bedroom again. Toby of course kept looking for Tyler. How I can't wait to reunite those two! Bowser was sick for some reason I still don't know. He threw up and then had bad diarrhea for about a day. Of course he had diarrhea in the middle of the night also, so I had to get up to let him out. Or did I? One time standing outside I heard the flaps of Toby's dog door. Out comes this large black lab through a door meant for a beagle! While odd it reassured me that the kids would be okay.

While in Denver I talked to Nicole about the fundraiser she wanted to have and about a website for status updates. I could tell I was loosing the battle in trying to keep everyone updated. Tyler just has so many great friends. Once back in Houston I finally had some time to set up this blog.

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