Information overload

Thursday’s talk went well. Although Colman was there with us, he played a game in the waiting room while Kevin and I had the talk. There weren’t any major surprises, but I did learn a few things. Like the fact that nationwide there are only about a hundred good quality donor hearts that come available each year for transplant in children. I mean, I knew organs were scarce, but that really puts it in perspective. Of those 100 available hearts, TCH performs about fifteen heart transplants a year.

Also, depending on how large Colman’s heart is, he may be able to receive a heart from a young adult. They said they wouldn’t go past the age of 28, but that opens up a lot more possibility than what I was originally thinking as far as donor hearts.

We’re still set to start the transplant evaluation on January 6th, although they want us to talk to a different heart surgeon than the one we were originally scheduled to see. The cardiologist wants us to discuss heart transplant and the possibility of repairing the tricuspid valve again with the heart surgeon. We’ve spoken to two surgeons about repairing the valve and both thought that the risks outweighed the benefit to Colman, but the cardiologist thinks that it’s definitely worth exploring. As much as I hate to think of Colman undergoing a fourth major heart surgery, if we could get three to five more years out of this heart, that would be huge.

The cardiologist is also making a referral for Colman to undergo a workup with a geneticist in Houston to see if they can find something that the endocrinologist might have missed in regards to Colman’s lack of growth. They pulled up Colman’s growth chart on the computer and it’s shocking how he’s fallen completely off the chart. His growth keeps going in a straight line as the curve keeps getting farther and farther away from him. And it all coincides with when he coughed up the cast and his tricuspid valve leak went from the mild category to the moderate to severe category. I’m happy to see a geneticist, but my gut tells me that this is all going to come back to his heart.

(Eventually, I think it will be easier to list the specialists Colman has NOT seen as opposed to the specialists he’s seen.)

We’re also looking at a possible repeat heart catheterization to check Colman’s pulmonary pressures and heart function to see if anything has changed since March of 2013. I was hoping we would be able to avoid another heart cath for a while, but it doesn’t seem like that’s going to be the case.

I’m looking forward to getting this evaluation behind us, and hoping it provides us with the information we need, to know what’s best for Colman. As we discussed illness, rejection medications, cancer and mortality rates, I couldn’t help but think, It shouldn’t be this hard to grow a kid.

But in our case, it is.

One piece of good news we received as a result of our visit to TCH is Colman is off the blood thinner, Lovenox. We will continue to give him his daily dose of baby aspirin, but I don’t have to give him shots twice a day any more, which is huge. We were all really happy about that. Who knew Dr. Jeewa was Santa Claus? Merry Christmas to us.

I hope everyone has a great holiday!

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5 thoughts on “Information overload

  1. That boy is a trooper and a fighter. We will continue to keep you guys in our prayers. Meanwhile, have a very Merry Christmas.

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