Another December, Another Echo

Teddy is going to have another echo this Wednesday. He's been a little lethargic lately. I don't know if it's just because he's decided that big boys (he's 5 now) don't take naps, or if he's growing, or if his heart needs a new valve, or if it's some combination of all those things. We'll find out what happens Wednesday. Maybe they say that we just have to wait. Or maybe they'll say that we need to schedule surgery soon. Whatever happens, we'll be ready for it.

We haven't always had the best luck when it comes to surgery. Or more accurately, with the recovery from surgery. His first surgery was at the ripe old age of a 8 days. He went in to have a conduit put in to move blood to his pulmonary arteries. They also did a bit of work on the valve, but not too much. He went in at 7:45 and was out by 3:15. And then around 8:15 or so he went code Blue. His heart rate dropped to 40 beats per minute (which for a newborn is dangerously low). They did chest compressions and they swapped out his respirator and he snapped out.

After his second surgery, 20 days later, they put in a personally tailored artificial valve. And in the recovery room afterward, Teddy coded. Apparently the drugs that they put in blood to keep it from coagulating also messes with the balance of potassium. In a tiny person who's had most of their blood replaced, this can cause serious problems, and did. The doctors did chest compressions, and hit him with a bunch of drugs and got his heart going. He was fine. 

For his third surgery, we were hoping that since he was now 2, and bigger, that this wouldn't be a thing again. When he came out o surgery, there were two lines leading into his heart. One of them came out of his heart, which means that when they pushed the sorts of recovery medication that they do, it created pressure around his heart. This dropped his blood pressure. So then they pushed more medicine through the line, which created more pressure around his heart. And Teddy coded twice that night.

So, if we're a little twitchy over the next few days, it's because this is what's playing on our minds. Surgery is necessary for him. He has to have his valve replaced. Nationwide Children's is an excellent hospital and his surgeon is amazing. He's had great care there. And yet, it's still open heart surgery on a kid who's going to be 40 pounds with a heart the size of a clementine orange, maybe.

After the echo, I'll add a post to let everyone know what's going on with the kid and his heart.

A few FAQs:

1. What's Teddy have? Truncus Arteriousis. He has an artificial aortal valve and a homographic conduit to his pulmonary arteries. (That's a bit of donor tissue that runs up to his pulmonary arteries, where they were separated from the central truncus).
2. Is that a genetic thing? Nope. Neither genetic nor environmental. It's a developmental thing where stuff just went a little wrong when he was developing in the womb. When and if he has kids, they have just as much chance as anyone else of having the same thing.
3. Is it common? Nope. It's pretty rare. Congenital heart defects happen in 6-8 kids per 1000. Truncus is around 1-2% of those. It works out to 5-15 per 100,000 kids. And yet, on the day that Teddy was first admitted to Nationwide Children's, there were something like 4 other Truncus kids.
4. How many surgeries will he need? As many as he needs, really. But the estimate is one between 5 and 7, one between 12 and 14 and then one later. Basically, as he outgrows the heart valve, he'll need surgery to replace it and the conduit to his lungs. 
5. Are there any special things you have to do with him? Can he run or cry or yell? Most of the time, Teddy is like a normal-ish kid. He's had a few developmental issues related primarily to his motor skills, but on the other hand, he's very bright.