Sunday, April 16, 2017

Heart Too Full

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—not as many as someone in the actual medical profession, of course, but many more than the average, non-medical person.  I did time in the ER as part of my EMT training when I was (much) younger, and, when you’re the low man on the totem pole in the ER, taking people’s blood pressures is about all they let you do.  So I took a lot of blood pressures then, and I’ve observed a lot (in my family, I’m generally the person forced to go along because my mother taught me to speak medicalese).1  And, in all those blood pressures, I never saw a diastolic reading2 that low.  Hell, I wasn’t even really aware it ever went that low.  After resting on the table while they did the ECG,3 he registered 102 over 50, which was an improvement, but still I was mildly troubled about that 38.

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—even though that’s primarily because her father wanted to have a boy who grew up to be a doctor and I just inherited the vicarious lifeplans—and I seriously considered it for a good deal of my early adult life.  But though I found it interesting, I didn’t have the passion for it that I would need to push me through medical school, and residency, and that whole grueling process.  But I understood the basics of it just fine, and I never minded the blood or other bodily fluids, and I always thought the idea of cutting people open and rooting around inside them was not at all gross but utterly fascinating, so the mechanics of medicine is something I understand and am comfortable with and usually try to focus on.  But sometimes it’s difficult.

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—well, as okay as it can be, with something like that hanging over your head, but surprisingly you really can put it out of your mind and get on with life.  Which we did, for the next neary eleven years, until this week.  Now it’s very difficult not to fall back into that time of feeling like you don’t know what will happen, and you don’t know what’s going on, and you don’t know how life will keep going, and you’re just afraid.

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—the most important ways—you will be their everything, and they will be yours.  You sense that ... but it’s just a feeling.  By the time you’ve had them hanging around for 11 years, the potential is realized.  There’s no more wondering who they’ll turn out to be: by now, you have a really good idea.  You know their faults, and their weaknesses, and their stubborn streaks.  And you know their power, and their strength, and their love.  This child, I’ve played Rescue Heroes and Imaginext with, and LittleBigPlanet, and The Legend of Zelda, and Heroscape, and D&D.  I’ve watched him put together complex creations out of Legos, and Magna-Tiles, and blocks in Minecraft, and those electronic projects where you snap components on the board and make the fan turn on, or the speaker buzz, or the light bulb light up.  I’ve seen him off to summer camp,5 off to work with horses, off to ride roller coasters, off to swim in the ocean and countless pools.  I’ve slept with him snuggled up under me, and I’ve groaned as he continued to climb up into my lap long after he was way too big for that.  I’ve introduced him to Red Dwarf and Dinosaurs and Mystery Science Theater 3000 and even The Daily Show and Stephen Colbert’s Late Show.  Today I hid 12 eggs for him that he had a hell of a time finding and then I hugged him and didn’t have to bend down at all, because in another year or so he’ll be just as tall as I am.

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 trydifficult as it may be, I’m going to try very hard—to concentrate on all the ways that my life is better because of my son, and how lucky I’ve been to know him.  That will be my focus, if I can manage it.  And there’s a lot of it to contemplate.


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.

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