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, July 29, 2010

Indiana and a Pulse

Our trip to Indiana was basically uneventful, well kinda......
Our first night of the trip, when we stopped in Des Moies, IA, the battery charger showed the "broken-battery" symbol when we put the batteries in.  Going from memory, I thought I was supposed to push and hold the specific battery's button, which would re-calibrate the battery so that it could hold a full charge.  I did this and saw no indication that it was re-calibrating.  The down side of re-calibrating is that it first drains the battery completely, then recharges it (about a 12 hour process).   I tried looking on the Thoratec web site for instructions but couldn't find any.  I talked to Kathe, the VAD coordinator at UHC, and confirmed it doesn't show an indication.   While in Indiana, I noticed one of the batteries in the charger had a red light on.   This meant the battery was completely dead.  Once again Kathe came through and had replacement batteries to us the next morning in Fort Wayne.

The trip to Indiana was going well.   Tyler's family was very busy getting donations for the benefit on July 16th.  Susie, a family friend, had instigated the benefit after we had decided to visit.   She, along with Tyler's high school drama teacher Harold, were able to secure the Churubusco High School cafeteria to hold the benefit.   There were many local business that donated items and notices were put in the local shops in Churubusco.

About 5 days before the benefit, Tyler and I went to Lake Wawasee to hang out with our friends the Lahren's.  We took their boat out and "docked" at a sandbar in the middle of the lake.  Renee was worried about what to do if Tyler fell into the lake.  Basically, you pull him out and make sure the controller didn't fry and if it did, use the backup controller.  We had no incidents and everything went fine.  Of course, when we driving back to Tyler's parents house, we realized we didn't have the backup-bag.   Where was it?  Oh, on the boat.   Luckily the Lahren's hadn't quite left and were able to grab it and bring it to us back in Fort Wayne.  It is amazing how easy it is to forget stuff since Tyler is doing so much better now.   For the boat, Tyler took his shower bag so that the controller and batteries would be protected from water splashing and everything went fine.

I took a short trip to Albany, NY from Fort Wayne to visit my sister and her family.  Very nice trip and I figured everything was basically going well back in Fort Wayne.   Well, maybe it wasn't.  Tyler was out with his father and his "15 min. battery alarm" went off.  He silenced the alarm and then forgot about it.   An hour later the "5 min alarm" went off.   He had his backup batteries with him so it wasn't a emergency, but doing these "tests" to see just how long the batteries will go maybe isn't the best thing.
Also, Tyler called me on my ride to the Albany airport to return to let me know his mother had been taken to the hospital because she became extremely sick the day before.  It ended up being a small bowel obstruction and she had surgery on the day of the benefit.  She ended up spending about 5 days in the hospital.  We are being told by some that Tyler and I leaving Colorado is a danger to us and others and maybe we should be allowed to travel!

The fundraiser went very well.  I was a little nervous and preparing for a meeting a lot of people and Tyler thought only a small handfull of people would show up.  Well, it was a lot more than 20 people.  I'm not sure how many came, but seemed like around a hundred or more.  Everyone was wonderful and very glad to be able to see Tyler in the flesh.  Just like the Denver benefit, the turnout and support was overwhelming.  Relatives, cousins, high school friends and teachers, on and on.   The benefit lasted from 6pm to 9pm and while Tyler was a bit worn out, he was extremely happy to see everyone.

The drive back to Denver was pretty uneventful and we were glad to be back home.

Tyler had his monthly checkup last Monday and the nurses felt a pulse.   He isn't supposed to have a detectable pulse, just a continuous flow.   So what does this mean?   Dr. Frasier at St. Lukes/Texas Heart Institute, had made comments that maybe given enough rest and healing time, Tyler's heart may repair itself.  The larger consensus was that the damage was to much to heal.   But, Tyler is of course the "miracle child", so who knows.   It would be the ultimate outcome to not need a transplant and be able to remove the pump.

So, thank you to everyone who turned out for the benefit.  And thank you to Susie, Tyler's family (I'm thinking about you Temple!), and everyone else that helped out.

Now back to work,

Robert

3 comments:

  1. 在莫非定律中有項笨蛋定律:「一個組織中的笨蛋,恆大於等於三分之二。」. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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  2. It was SOOOOO GREAT to see you Tyler and meet Robert. I hope we can do it again (to celebrate next time). Glad u made it home safely ; ) V--

    ReplyDelete