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

Moving Up and the Five Stages

First, thanks to everyone who has left comments on the blog. I do get to see them but can't reply to them. And it will be great for Tyler to see them soon.

Another powerful day for Tyler. I walked in to see him working with Physical Therapy. Moving his arms around and lifting his legs while in his chair. I mentioned to them that he always wanted to have Jillian (from The Biggest Looser) train him. The physical therapist knows the show and said she would know how to treat Tyler now. (Ha, ha, my revenge!) Tyler smiled his sly smile. They had him stand up while they blocked his feet. He did well but 30 seconds was extremely tough for him to do. He was also having some difficulty ascertaining left from right. But other than that he was doing well. A speech therapist also came by to work with Tyler and test his speech.

I was told an order had been put in to move him up to the "12th floor". I was shocked. He is progressing very well. The 8th floor nurses said they were happy for him but really enjoyed working with him over the past 3 or 4 days. The social worker, Stephanie, came in to see Tyler and told him how good it is to be moving to the 12th floor as it was next step to leaving the hospital. Tyler also mentioned his heart surgery and referred to it as his by-pass surgery. Stephanie told him he didn't have a bypass but had a device implanted to help his heart pump his blood.

I was alone with Tyler before they moved him and he asked how he was supposed to get to the 12th floor. I didn't understand the question and asked what he meant. "I can't even stand for 30 seconds and I'm on the 8th floor. How am I supposed to get all the way to the 12th floor?" I admit I laughed a little. I told him that while he was changing rooms, he was keeping the same bed and that he would get to take another "bed ride" through the hospital. He also asked what Stephanie meant about the 12th floor begin close to the exit. Stephanie talks pretty fast and while it looks like Tyler is understanding it all, he still needs time to process. I explained that the 12th floor was the last floor he would be on before he could leave the hospital. "Oh, great." I then had to explain that leaving the hospital did not equal going back to Denver, and that we would have to see what the next few weeks would bring. "Oh."

When I visited him on the 12th floor he was in decent spirits. Completely exhausted, but in good spirits. My mother was with me and Tyler said to the cardiac rehab nurse, "that is my wife". (Again with that wise-ass smile). The nurse looked at my Mom a bit bewildered, and I responded, "I'll be damned, I'm lugging all your stuff from the 8th floor to the 12th floor, handling paper work, trying to have my business meeting, and taking care of you. Who's the wife!" Tyler and I laughed.
Stephanie visited again with Tyler and I and the surgery discussion came up again. I could tell Tyler and Stephanie were confusing each other so I finally said to Tyler, "you did have a triple bypass, but you also had a pump implanted to help circulate your blood." Stephanie hadn't realized he had also had bypass surgery and Tyler was starting to realize he had more than just bypass surgery. Stephanie went off to get Tyler a print out about his HeartMate II LVAD device.

I had a business meeting (phone call) with my business partners so I told him I would be back and he could take a nap.

When I saw him again in the afternoon we talked some more and went over his food choices for breakfast, lunch, and dinner. By the way, the feeding tube is gone! This helps his voice sound more normal. He then began to look at the cards he was sent and the e-greetings. He got choked up and I asked what was wrong. He said he was noticing the dates of the e-greetings and it was overwhelming to him how long it has been. He then asked, "what happened?" I looked at him, took a deep breath, and asked "..are you sure you want to hear this?" "Yes."

I began by asking him some questions to try and figure out what he remembered. He somewhat remembered Bill, Heidi, and DJ coming over to the house to go to the airport. He also remembered the flamingos and iguanas at the resort and that we liked the resort. I began telling him the story of Sunday and that we were having a great time sitting by the pool and beach, drinking virgin fruity drinks, and that Heidi and him went snorkeling. He also remembered that we went to the lobby to play cards before dinner. As I began to tell him what happened that evening I began to cry a bit uncontrollably. He reached out and grabbed my hand and was crying also. We got as far as being at the clinic preparing for the air ambulance flight. At this point his food was arriving or something, and I said that was all we could do for tonight and to let that absorb. He knows how upset I am and said "..I love you so much." We held on for a minute and then started to move on. Retelling the story was so much more difficult than I had imagined and made me understand the movie cliche of "i had to re-live the event." I really had to re-live the event with Tyler. My mom was trying to take notes at the request of Tyler, but was asking for clarifications as I was telling the story. I finally said that it was in the blog and Tyler could read it soon. I couldn't re-live the story and re-live writing it at the same time.

My mother and I finally left to get back to the apartment. There was a Houston Texans vs Tennessee Titans game that night and the light rail was packed. We finally squeezed into one of the trains and got back to the apartment. I talked to his mom and sister and let them know they could call him. The nurses want him to still go slow with phone calls. Tyler then called the apartment. Weird! I talked to him and asked how his phone call with his sister went. He said it was hard and that he didn't know he had died. I told him that he did technically die, but he was back now. He then switched into Tyler mode again talking about how he didn't know how to work the TV remote and it was "just ridiculous..." This is typical Tyler and made me laugh. I told him to hit the nurse button and they would explain it to him. Ugh! I'm still technical support! He then said, "...well, the reason I really called is I wanted to make sure you knew about the meeting on Tuesday about 'my pump'". Of course he doesn't know that the "meeting" is a mandatory class I have to go to about "his pump", which is a class for the caretakers of the patients that have this LVAD. I said I did know about the class and was going to the "meeting" tomorrow. He also told me that a volunteer had come in and prayed with him, which he said was really good. I also told him to look at his left wrist and the wrist band with my name on it. I let him know that Bill and Heidi had gotten a couple of wrist bands made while still in Mexico and that ours had his name and a heart on them. I said, "....Heidi said that if Lance Armstrong can have a wrist band then so can Tyler". Tyler said that was so sweet. I of course said "...what the hell? I didn't get wristbands made for me during cancer!" He laughed with me. He then said that he was going to finish his cereal, get his pain meds, and go to bed.

As I was thinking about today I realized that I had always thought that the 5 stages of coping was something you did about an event and then it was over. What I've come to realize is that we are going to be going through the 5 stages on a daily basis. Each day brings all the 5 stages but also hope, fear, laughter, sadness, and acceptance.

His family is sending some money so that I can get Tyler a mini-laptop he can use to read/write the blog and start emailing again. Before that I'll continue to fill him in on the past month and while excruciating for both of us, I'm very impressed that Tyler wants to know and is handling it as best as one could expect.

Tyler also seems to be at peace with the fact that the house and animals are being taken care of and that we have some big decisions to make. He still is having problems writing and standing, but he continues to improve every day. It is amazing to watch him struggle with these seemingly minor steps and yet know how huge each step is for him. He is strong and determined and I'm looking forward (although nervously) to him leaving the hospital in the next 3 to 4 weeks.

Nicole is coming out this Friday, the same day my mother goes back. This is going to be really good for Tyler as he has already said, "...well I hope people visit!" I said that he needs to remember that he is in Houston. My mom could tell I was getting tired trying to help Tyler with his menu choices. She stepped up to the plate and "nagged" Tyler the way only a mother can to finish making his choices. I'm able to bring in some clothes and stuff for him on Tuesday and he is very happy about that.



  1. Tyler and Robert, I am so glad to hear that visiting is an option! I realize it'll be a while. In the meantime, looking forward to the fundraiser, and thinking of you both, every day.
    Much love-

  2. Wow! What huge progress has been made just this last week---how wonderful---Thank you Lord! Tyler I love hearing how your sarcasm has returned....it's you....welcome back! Susie Smallwood