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, December 26, 2009

Halfway House

Tyler was discharged by the doctor from the hospital about 9:30am Wednesday.
We left about 12:30pm once all the paperwork was done and transportation (the hospital wheelchair ride) came to get Tyler. We almost got into trouble after packing up our stuff and just trying to leave. We just desperately wanted to get out of the hospital after 8 weeks of being there. Once we got to the main lobby I was asked to go get the car (from the garage) and then I could pick up Tyler. I had to explain that since the transport person wasn't trained with LVADs, Tyler had to stay with me. So Tyler and I walked to the garage again to get the car. We pulled up to the front entrance to get our stuff including the LVAD equipment (battery charger and power module). The transport person had left so I just went in and grabbed the wheelchair cart. Another person then started accosting me about "where is the patient?" I was loosing my temper and just said "in the car!" and continued to roll our stuff out. She was obviously freaked out a bit since this is not hospital policy and kept following me asking "where is the patient". I finally stopped and explained again that I can't leave the "patient" and that he was IN...THE...CAR. I was basically saying..."LEAVE ME ALONE". Felt almost like a prison break.

Before we left Tyler's hospital room, the doctor and social worker both commented that they had been in touch with the University of Colorado Hospital and were exchanging information. The doctor mentioned that we should be able to do about 4-5 clinic visits in Houston and if all went well should be able to transfer care and transplant lists, and finally get home. That would put us moving back home at the beginning of February 2010. At that time Tyler would have been away from the house for almost 3 1/2 months.

We then proceeded to get some lunch and go to the pharmacy to fill his prescriptions. We waited about an hour and a half at the pharmacy to get 14 prescriptions filled. This was cutting it close since Tyler needed to take two of the prescriptions right away. Once we finished at the pharmacy we went back to the apartment to unload everything we brought from the hospital. Then we went to the grocery store. Tyler had to stop a couple of times and rest at the grocery store while I was finishing up.

We then had to figure out how to make sure we were dispensing the right medicines at the right times, how to sleep (since Tyler can only sleep on his back or left side), and how to take a shower with all the LVAD equipment since it can't get wet.

While it is good to be out of the hospital and in our "halfway house", we now are adapting to another "chapter" of this experience. We will miss the nurses, PCA's, and staff a lot! As the days go by we are figuring out how to deal with everything step by step. It is amazing how the "little" things have become "big" things now. Just going to the grocery store takes a lot of thought and preparation.

The days in Houston will become "normal". Logging all the medicines taken and equipment settings, doing physical therapy exercises, and running errands. Janet brought over treats Thursday night and we took over Tyler's spaghetti sauce Friday night. Tyler was able to ascend the stairs to Janet's apartment, although slowly, but is still making progress walking around. I also called Mitzy Friday night and she has been able to go back to her house north of Houston. Her husband, Ben, was moved to a clinic near their house on Tuesday. Interesting that Mitzy and I arrived at St. Luke's the same night and for almost the same exact duration.

I have posted two links about the LVAD so people can get a glimpse of what it looks like and a video of a woman living with the LVAD.
Living with an LVAD
HeartMate II Video Clip

Now we hopefully can have successful clinic visits and start looking towards getting home. We are trying to determine if we are going to drive or fly home. Flying would be faster and would get us from big city to big city. But we would have to carry his LVAD equipment onto the plane and that will become a hassle. Also, we currently have Tyler's car in Houston and would have to figure out how to get that back to Denver so we would also have it there. Driving is simpler logistically, but means 20 hours (split over two or more days) through not the most populated areas of the county. I figure we made it from Cozumel to Houston unexpectedly so we should be able to deal with the unexpected.


1 comment:

  1. Thanks for posting these two videos - I learned a lot from them!