Sunday, August 27, 2017

Heart Breaking

In our last heart condition update, I said that the pediatric cardiologist for our middle child, now 11 and still occasionally known as the Smaller Animal despite the arrival of his little sister,1 had told us it was time to start talking to cardiac surgeons.  And we have done that.  We interviewed the top cardiac catheterization guy in our area (and possibly the entire country), who told us that the state of cardiac catheterization today wasn’t sufficient to help us now,2 and we attempted to interview one of the top cardiac surgeons in our area who works on both adults and children, who didn’t tell us much because the scheduling was handled so poorly that we barely had 5 minutes to speak to him, and we interviewed the top expert on the Ross procedure in our area (and possibly the country—he famously performed this operation on Arnold Schwarzenegger, in fact), who told us that our Smaller Animal will be having surgery on November 6th of this year.

He told us a lot of other stuff too.  He said that the surgery would take around 4 hours and that the Smaller Animal would probably only spend a single night in the ICU.  He would spend another 3 – 4 nights in the hospital and hopefully be home by the weekend.  He said there would be minimal restrictions on our son’s behavior after that point: stairs would be fine, just no fighting with his siblings.3  The doctor assured us that his sternum would heal quickly ... you know, after they split it open to expose his heart.  He told us that the chance of serious complication from the surgery was around 1%, and the chance of brain damage from being on the cardiopulmonary bypass pump (a.k.a. the “heart-lung machine”) was less than that.  He didn’t mention the chance of getting HIV from the blood transfusion, or developing hemolytic transfusion reaction—that’s when your body rejects the alien blood—but we were thoughtfully provided with a nice scary contract to sign outlining all those latter possibilities.  Oh, and let’s not forget the chance of contracting hepatitis, which, quite frankly, is not sounding so bad in all that company.

There was more discussion, of course.  We talked about cadaveric valve vs pig valve vs mechanical valve (cadaveric is the right answer, apparently: pig valves don’t come with sufficient conduit, making them harder to attach, and mechanical valves are out because no one wants to put an 11-year-old on blood thinners for the rest of his life), and we talked about eventual re-replacement of the pulmonary valve replacement, because it can’t last forever (hopefully that’s when the catheterization guy comes into it, to avoid any future surgeries), and we probably talked about more stuff that I can’t really remember right now.  Because, you know, they’re going to cut open my boy.  They’re going slice open his skin, and break his breastbone, and suck out all his blood into a machine, and then cut open his heart and root around in there, swapping bits and pieces and eventually sticking in a stray bit from a dead person.  As I said last time, I often try to focus on the medical minutiƦ, the mechanics of it, the technical terms, which I mostly understand and am comfortable with.  But, in the end, that’s what it really comes down to—they’re going to disassemble my child, and there’s a very good chance that they’ll be able to put him back together again, but there are no guarantees.  And I tell myself there are no guarantees in life for anything ... that he might be struck by a drunk driver while walking to 7-11 to get slurpees with his siblings, or he might get sucked out by a wave when at the beach one day, or he might contract a random virus that his body just can’t fight off, especially given that he’s starting from a cardiac deficit.  But none of that makes this any less terrifying, as it turns out.

I find myself getting caught unawares by it at odd times.  I was very successful at saying “I refuse to worry about this until we know for sure it’s going to happen,” and I don’t regret doing that at all.  But now it’s time to worry about it.  And of course worrying is useless: it doesn’t do any good and it ratchets up the stress level, which is actively doing harm.  But I used up all my ability to postpone the worry, and now it just sneaks up on me and pounces, apropos of nothing.  I’ll be thinking about something else entirely—financial stuff, or work stuff, or dealing with pets, or everyday chores—and I suddenly gasp, and I can’t breathe.  Just for a second, mind you.  Just for a second, my chest is tight, and I have that sense of unbounded panic, that “oh fuck” feeling that you get when you car starts to drift off the road or your boss sits you down and begins the “we have to let you go” talk or some family member starts telling you that one of your grandparents has died or the vet comes back to the waiting room and says there’s nothing to be done.  Then it’s gone, as quickly as it came, and I can breathe again, and it’s fine, I can deal with this, I just have to focus on one day at a time and one foot in front of the other and taking it as it comes, but that sneaky little fuck is still off in the shadows and it’s snickering at me softly, because it knows it’s just going to wait until I’ve forgotten all about it and then it will pounce again ...

I had to call my mother, of course, to tell her what the doctor said.4  I called her from the car on the way home.  This is my mother the nurse, so I had to regurgitate all the medical details for her.  When I got to the part about the 1% chance of serious complications or whatever it was, I said something along the lines of “so that’s pretty good, I guess.”  From the back seat, the Smaller Animal corrected me.

“That’s amazing!” he pointed out.  “That means only one chance in a hundred.”

That’s what he got out the whole conversation.  It’s often hard to tell what he’s thinking; he has a very “still waters run deep” personality.  We’ve never tried to “shield” him from information about his condition, never tried to send him out of the room when it came time to discuss what the doctors want to do to him.  After all, he has more right to know what’s going on than anyone else—it’s his body.  We’ll need to talk more, obviously (and the CHLA5 team has “child life specialists” that will help us find the right words to use), but so far I’m hopeful that he’s actually dealing with it well and not just suppressing it.  I could be wrong.  You never know what’s going on in the mind of another person, even one that you know as well as your own child.  But the way he jumped in and corrected me—not merely “good,” but “amazing”—gives me some hope.

And I guess it is amazing.  Only one chance in a hundred that literally ripping someone’s heart open and rearranging its insides goes horribly wrong ... think of what that chance would have been a hundred years ago.  Or even fifty.  It’s pretty miraculous, if you think about it.  In terms of raw numbers.  But, see, here’s the thing: my boy is not a number.  He’s ... my boy.  I’d really prefer the odds to be closer to one chance in a thousand, and even then I’d wish for better odds if I could get ’em.

But I can’t get ’em.  These are the best odds I’m gonna get.  And, really, we’re damned lucky to be getting one of the top guys in the country to operate on my son.  I’m nobody, you know.  And yet my kid is getting the same doctor that Arnold Schwarzenegger got.  Can’t really complain about that.

And I’m not complaining.  I’m just ... nervous.  And I suppose I will continue to be for about 10 more weeks.  And then ... then we’ll see.


1 Which is over 5 years ago, by this point.

2 Although he will very likely be the fellow who does any follow-up valve replacement after the inital Ross procedure.  See the last update for what a Ross procedure is, or just ask Wikipedia.

3 To which our replies were “yeah, right.”  The nurse practitioner assured us they could still argue.

4 The Mother is lucky; she just sent out a family-wide text and notified everyone on her side in one fell swoop.  My family is, shall we say, technologically challenged.  So I had to actually speak to my mother in person.

5 That’s Children’s Hopsital of Los Angeles.

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