We’re just 11 days shy of being 3 years on from the last time I wrote about my middle child’s heart condition. Today I’m revisiting the topic because we just got some news from his doctor. In that last post, I wrote:
The doctors estimated that my son’s heart wouldn’t last much more than a week with the stenosis. With the regurgitation, it could last years, perhaps even decades.
It could last that long ... but perhaps it won’t. ... your stress level goes through six-month cycles of peaking to insane levels because you dread that this time is the time when they’ll finally tell you he needs the surgery.
Well, it seems that time is drawing nearer.
That previous post was spurred by the occasion of the Smaller Animal’s first treadmill test. This week he had his third or fourth (I’m starting to lose track, honestly). Then he was 8; now he’s 11. On the plus side, he finally got up to 4.2mph at a 16% grade, for the first time ever, and he still did not have trouble breathing. When the nurse asked him why he stopped, he said his legs just got tired, which of course happens to everyone. However, his blood pressure reading were a bit scary. Prior to the test, he clocked in at 120 over 60, which is perfectly normal ... for a 30-year-old man. For someone his age, it’s a bit high, although I didn’t really register that until the doctor mentioned it the following day. But I couldn’t miss the fact that, just after the test, he was reading 112 over 38. Now, let me stress that I’ve seen a lot of blood pressure readings in my life—
As it turns out, his doctors were too. The following day, his pediatric cardiologist called us and let us know that it was time for us to start talking to cardiac surgeons. Just talking, mind you: it’s still possible they might say that, at his age, they’d prefer to wait before scheduling the surgery. But it’s also possible that they might say that the risk of waiting outweighs the risk of doing the surgery sooner. And I could go on and talk more about the advances in cardiac catheterization,4 or the details of the Ross procedure, but you’ll just have to go back and review that last post, if you haven’t already. Right now I’m having difficulty focussing on the technical issues, even though that’s what I generally prefer to do. The technical issues of medicine are something I can get my brain around. My mother always wanted me to be a doctor—
When our middle child was born, we had about 48 hours to just relax and be happy with him, until the whole heart issue blew up, metaphorically speaking, and took over our lives for the next several weeks. And then it was okay again—
I suppose it’s possible to look at it like it’s crueler this way: if anything happens to him during the surgery, we will all be much more devastated than we would have been if we’d lost him early, as devastating as that would have been. But back then he was mostly potential: there is a very visceral connection that you feel to your child which forms as you watch them being born, and you know instantly that you would die for them even though they’re just this sort of messy, uncoordinated, chubby, crying blob of trouble and poop and lost sleep at this point. But you sense the potential nonetheless ... you know that, one day, this will be a fully-formed human being with their own opinions and distastes and joys, and they will look up at you, and they will resent you sometimes, and they will be embarrassed by you sometimes, and they will be royally pissed at you sometimes, but in many ways—
So while one might argue that it’s crueler this way, I instead choose to look at it differently: I’m lucky to have had what I’ve gotten so far. If the universe or whatever higher power runs it continues to bless me, I’ll continue to be lucky and I’ll have even more experiences that I will treasure. But, no matter what happens, I’ve had 11 years of amazing interaction with an amazing kid who has enriched my life, and the lives of all of us here in this family, and I couldn’t imagine having missed out on that.
The next few weeks and months may end up being a scary time for us. I can’t say for sure how everyone will get through it. However, I’m personally going to try—
1 Not The Mother, that is, but my own mother, who was a nurse (and CPR instructor) for most of her adult life.
2 The diastolic is the second number. The first number is the systolic.
3 That’s the echocardiogram, which you may recall from last post.
4 We will also be talking with a specialist in that along with the surgeons.
5 We are lucky enough to live in the area served by Camp del Corazon, a summer camp specifically for kids with heart conditions that is staffed in part by pediatric cardiologists.