Wednesday, June 26, 2019

The Heart, It Races

"Let me start with the takeaways," the pediatric electrophysiologist began. "There are two big ones. First, this won't kill you. Second, it won't go away unless we intervene."

Supraventrical tachycardia (SVT). Thirteen months (and just 81 hours after I got home from a work trip to Japan), we finally had an answer to the inexplicable heart thing that has been plaguing Sky for just over a year. Getting to the diagnosis was a combination of frustrating waits and missed symptoms and a last-minute act of, shall we say, well-timed disobedience.

SVT reading
It started early last summer when Sky came in from basketball on the driveway reporting that his heart fluttered and he felt like he was going to pass out. Because the symptoms coincided with a significant growth spurt, we figured that it was a one-off. When he reported similar symptoms once or twice a month for the next couple of months, I reached out to our pediatrician, and she ordered an EKG. The normal report was both reassuring and frustrating, especially for Sky, who wanted to know why his heart felt so funny. Two different pediatricians told us that his symptoms most likely resulted from his rapid growth and dehydration.

In the spring, when we were in to see Ren's cardiologist (that's a whole other story, btw), I described Sky's symptoms and asked what he would advise. He suggested an echocardiogram and a 24-hour Holter monitor. We followed through with both, and both came back essentially normal. By now, Sky was getting anxious. He worries about a lot of stuff a lot of the time, and the unilluminating test results made him feel bad.

You've probably noticed that life tends to be chaotic around here, so three "normal" test results sent Sky's heart issues to the bottom of my concern list. He continued to get light-headed easily and to have heart "spasms" from time to time, but since we'd been multiply assured that there was nothing wrong, I wasn't sure what else to do. Then, the week before I left for a 12-day work trip to Japan, Sky started tennis camp. On each of the four days, he had increasingly concerning issues with his heart, ending on the fourth day (a Thursday) with him going temporarily blind. I contacted our pediatrician and Ren's cardiologist early Friday morning. By the end of the day, Sky had a do-not-exercise restriction.

Some problems seem unsolvable, especially when it's Friday at 4 pm and you're leaving before dawn the following Monday and you're not established with a pediatric cardiologist and the local pediatrician has just left the practice. Fortunately, we have a pediatrician back in Indiana who sees the kids once a year and who is amazing in all sorts of ways, not the least of which is that she doggedly pursued Ren's cardiologist until we had a plan and means to get Sky hooked up to a 30-day monitor. It took a few middle-of-the-night phone calls from Japan (sorry, travel mates, I know I was being a bit loud), but we got Sky set up with both the monitor and someone specializing in pediatrics to keep an eye on its readings.

Summer in Tohoku--my job's pretty awesome (#breathedeep)
By the time I got home in the early morning hours of Saturday, Sky had been wearing the monitor for four days and off of sports and exercise for two weeks. He was frustrated because he hadn't been cleared to go back to tennis (we were told the doc wanted a baseline before he did), and he was worried we were wasting time and money on the monitor (this is a huge thing for him, despite our constant reassurances). Given the haphazard way I'd strung together the medical coverage for this, I imagined that the lack of response from the doctor had much to do with the fact that Sky wasn't actually anyone's cardiology patient.

So, I made a decision that would turn out to be either brilliant or catastrophic (did I mention how HARD parenting is?)--I sent him to tennis on Monday morning with strict instructions to stop and record anything amiss. I also sent messages to both the pediatrician and Ren's cardiologist letting them know I'd done this. Sky and I both knew the weird heart thing wasn't going to happen as long as he was sitting around chatting with friends on Discord.

I dropped Sky off at 9, and by 11 am, I had a call from Ren's cardiologist's office telling me that he needed to stop whatever he was doing immediately. Within an hour, we had an appointment scheduled with the pediatric cardiology specialist for the next morning (an appointment I'd been told wouldn't be able to happen until August at the earliest when I called from Japan).

Summer Midwestern Sky (#breathedeep)
So 13 months and 81 hours later, we finally know why Sky's heart "spasms." We are trying to wrap our heads around how we got here and exploring the various available interventions; fortunately, the condition seems highly manageable. Sky is back at tennis this morning, and I am reminded of my mantras: "Breathe deep," and, perhaps less inspiring but still extremely helpful, "Everything will be ok."

After the appointment, I took Sky for pizza and a little shopping. Not sure Taro approves of Sky's purchases, but I think if you can match the ties to the eyes, you're doing something right!

Taro is not amused.



1 comment:

Morgan Hazelwood said...

Oh wow! Your doctor is perfect to start off with those take-aways. That's exactly what Sky likely needed to hear (and you). I know exactly how much of a relief a diagnosis can be -- it's validation that it's real and not 'anxiety' or 'all in your head.'

Glad he's back at tennis. Keeping him cooped up, I'm sure, was hard on EVERYONE.