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, November 14, 2009

Back to Houston - 11/3

Dane, DJ, and I got the car packed up and we left at 3:30 am on Wednesday morning. I originally thought we would leave Tuesday, but I just couldn't get everything done I needed. While still in Colorado on Highway 287, I got pulled over by a cop. Thankfully the cop didn't write a ticket and was very nice. I pulled away from being stopped and within 1/4 mile was already speeding again. Hmmmm, wonder why. I looked at the speedometer and immediately pulled back over. I told Dane she would have to drive. I finally got some sleep in the car and started feeling better. The drive was pretty uneventful and took us about 19 hours.

We got back to Houston and as we were driving down I-45 I started to see familiar landmarks. Unfortunately these were the landmarks I saw riding in the ambulance a week earlier. Dane noticed I was getting tense and anxious. We spent the first night with Tyler's parents, but I went to the hospital first to see Tyler. When I got back from the hospital I just couldn't go up to the hotel room. I probably spent an hour talking to Melissa expressing all the fears I had.

It is still amazing to me that Sunday 10/25/2009 has never stopped. I'm always confused as to what day it is and just feel like this has been one continuous day.

Tyler continued to remain pretty stable over the next few days and I continued trying to get on top of the situation. His brother and sister had gone back to their homes, with his Mom and Dad staying at the hotel. His parents were planning on leaving Friday (Nov. 6), but we started to hear from the doctors that unless a heart came he was going to have the LVAD surgery. They decided to stay longer. By this time his parents and I were getting closer and closer to each other. What a wonderful bonding experience for us! The following day after I arrived, his parents, Dane, and I visited Tyler at night. The nurse, Barbara, mentioned that I was being very quiet (unlike me she said). I just said I was exhausted from the drive back. I was at a point that I didn't care about the medial details, I just wanted to know he was still doing good for his condition. His parents left and I mentioned that I needed to do something. The nurse pulled the curtain and I began reading two cards to Tyler that our neighbors (Karen and Dave) had given me. I started describing and reading the cards and was having a hard time getting through them. I looked up and Dane and the nurses were tearing up and crying. I asked if there was anything I could do for them! Dane felt bad about crying, since she was there to support me and felt she should hold back and be strong. But she said the emotion was just to much for her not to cry.

Dane helped me buy groceries and get set up in Houston. It was good to have someone to talk to those first few days back in Houston. She flew back on Saturday (11/07/2009). I spent the next week with his parents riding the roller-coaster that this experience is. The first Sunday I was back, his Dad invited me to their hotel room to hang-out and watch football. I wouldn't have TV until the end of the following week.
His parents and I got closer and closer over the next week. We spent our time visiting Tyler, meeting with doctors and nurses, meeting with social workers, trying to stay on top of finances, meeting with social workers, meeting other patients. Finally on Tuesday (11//17/2009) the doctor's decided to proceed with the LVAD implant. We understood but felt if we could get a heart that would be better. In fact it appears that due to the Ft. Hood incident (I never knew what happened at Ft. Hood), the hospital had received to "offers" of hearts for Tyler. They weren't the right size so both had to be refused. The LVAD surgery might be a "blessing in disguise" (copyright permission goes to my mother).

We were then introduced to Peggy, the LVAD coordinator/social worker. She showed us the LVAD pump and explained how it worked. Yet another freaky, surreal moment. I'm holding what will be going into Tyler. She of course gave us overwhelming information and she noticed that I was just staring at a piece of paper. She asked if I was okay and I just said, "...this is so much information that I can only take in so much at one time, and know I will be told again." She commented that I just got a 'gold star'. Like it was some pop-quiz. At the end she made us sign some papers. Basically these papers are a pseudo contract that states I, Tyler, and his parents will do certain things so that Tyler can stay on the transplant list. Peggy said, "Since I know how much you like to sign things, I have some papers for you to sign". My response was, "..so you know about that?". She then said we have received multiple gold stars for the paper we all signed about decisions, and that the entire 2nd floor ICU knew about it. That was good for a little laugh.

Then I got this blog together and started making daily updates on Tyler's progress. Many thanks to Dane for styling the blog since that is not my specialty. I was still a bit foggy and his parents and I continue to take turns crying and consoling each other. His parents have been here in a hotel room for almost three weeks straight.

I will continue to say the following many, many times. The support and love from all of our friends and family is so much appreciated. I've not been shy at all asking for support since I'm in full protection mode for Tyler. I'm comforted in knowing how many people are taking care of things like the house, our "children", help with the blog, fund raising, and thoughts and prayers. When a need arises or a decision has to be made, I'm always presented in my mind with the right person. I know a lot of people would like to visit or do whatever they can to help. Please accept my sincere thanks and keep hanging in there with us. I'm still slowly accepting the fact that Tyler and I will be in Houston for quite a while and that our lives have radically changed. If I can just bring our loved ones and maybe the house into this new reality then we will be fine. If I can hold onto some of Tyler and I's previous life, we will be fine.

No comments:

Post a Comment