The Heart It Races Again

Remember back when Sky had Supraventricular Tachycardia (SVT) and ended up getting a heart ablation (link)? Well, funny thing (and by "funny" I mean "Are you kidding me with this?"), now Falcon has SVT. Funnier, SVT is rarely hereditary, and when it is, it’s a specific type of SVT that neither of the kids has/had. I guess that either means that we're playing really tight odds or that our family is in the process of helping doctors discover a new hereditary component to SVTs. 

It's starting to feel pretty Groundhog’s-Day-y. Apparently the early high school years are a perfect time for our kids' hearts to decide to go out of pocket, literally. It starts the same way; they hit a growth spurt and then start getting light headed whenever they stand up quickly. There’s a name for this: orthostatic hypotension. And, it’s pretty common as autonomic nervous system learns to adjust to the rapidly changing teenage body. That doesn’t make it any less weird to have your kid passing out or almost passing out every time they stand up. Keeping well hydrated and changing positions more slowly are the treatments for this, but you might as well ask my kids to climb Mt. Everest or cure cancer because they seem to find it impossible to do these things.

I've decided to add random Lego plant pictures to this post. 

At some point the kid’s body should regulate. The problem is that every body is different, so it’s hard to know when to worry. In fact, I’ve decided that parenting is one long exercise in trying to figure out if I should be worried. 

So, for awhile Falcon was getting dizzy when she stood up, and then she seemed not to, at least not at home. But one day a couple of months ago, Falcon mentioned that she has passed out or almost passed out at school a few times even though she wasn't in the process of standing up when it happened. When I pressed for more information, she described feeling like her heart was racing or that she couldn't catch her breath. She also noticed her Apple Watch heart rate readings shoot over 100 fairly regularly, even when she was just sitting. This definitely didn't sound like the usual syncope.

Did you know they had so many different types of Lego plants? Stow did.

We managed to get an echocardiogram and a 7-day holter monitor for her fairly quickly, but when we went to the local cardiologist for a follow up appointment, he had no idea where her test results were. Given how many times Falcon had pushed the button to record episodes, we were both sure that SOMETHING was up. So when, without any data to prove it, the doctor told us, "Your job is to tell me what is going on. My job is to worry," it was a little hard to believe he planned to do much. This proved to be true when Falcon texted him during an episode (like he told her to do), and he never responded. 

By the time we received a letter from him in the mail (apparently he never calls--only sends letters), I had already asked Falcon's primary care doctor to start the process of referring her to the university pediatric hospital an hour away. I was glad I had taken this step when I saw the cardiologist's letter to her: "Falcon, Thank you for letting me treat you. We got the test results. Your heart was fast a couple of times." I can't imagine a more unfulfilling letter. When Falcon's regular doctor sent the referral he also sent a copy of her test results to me. They clearly state Falcon has a few things going on with her heart and that one of them is SVT. Given how quickly the university pediatric cardiologist responded when they saw Sky's SVT on the heart monitor, the local cardiologist's lackadaisical approach to things seemed mind boggling. 

Are the flower pictures distracting you? I just thought they might add some color.

Now somehow we find ourselves on the same path we traveled with Sky. The nurse practitioner who saw Falcon at the cardiology clinic at the pediatric hospital scheduled an appointment for her to see the electrophysiologist, the same doctor Sky saw. We don’t know what the best treatment option will be for her, but at least I have a really good idea what the doctor is likely to say!

2024 has been a weird year so far.

Postscript:

I put these songs back on my current playlist in honor of Falcon's diagnosis. She was simultaneously amused and appalled when I first played them for her, but I heard one of them coming from her room yesterday, so I guess they made her playlist, too!

Click the links to hear them on Spotify:

Dr. Dog, "Heart It Races"

Sia, "Elastic Heart"

Tune-Yards, "Heart Attack"

My Heart

I am sitting in the cramped hospital room watching the nurse keep her eye on Sky's vitals. His heart rate keeps falling and setting off an alarm. She tells me not to worry, that the medications they used during his procedure just worked a little too well.

Procedure. I've always hated this word in reference to something being done to a human body subdued by anesthesia. All week Sky and I debated the line between surgery and procedure. Now that he's a teen, we don't agree on much, but we both agree that if cutting and repairing are involved, it should be called a surgery.

"Besides," he says with a grin, "I want to be able to tell people I had heart surgery this summer."

This is out-patient, 2 or 3 hours under general anesthesia in order to thread a catheter up to his heart and put a roadblock in the spare electrical pathway that keeps causing it to race. It doesn't matter to me what they call it; the pre-op process and the time spent waiting for updates from the surgical theater are more than enough to trigger memories of so many surgeries past. Ren and I get out long enough to get some overpriced, ridiculously-healthy, oddly-paired food at the "Asian" salad bar, but soon we are back and waiting in the room that suddenly seems cavernous now that Sky's bed has been rolled away with him in it.

When the nurse calls to tell us all is fine but that they have to cross into the left atrium, I thank her for the update and then try to focus on the tiny tennis ball high on the tiny TV screen. It's the first round of Wimbledon, and we don't get cable at home. Ren wants to know who called and what they wanted. I find it hard to explain in Japanese as my anxiety rises in my chest and settles in my throat. I know that crossing to the left increases the risk of dangerous clots and stroke.

The room has no windows, and I have to traverse a maze of hallways in order to reach one. The prospect of tracing my way back to the sunlight seems particularly daunting, especially since the hospital lobby is a dizzying combination of cows and farm theme and old cars. I'm at a loss as to how to keep my shit together. This surprises me given the vast experience I have with hospitals and surgeries. Ren barely takes his eyes from his iPad. Apparently his coping strategy works better for him than mine does for me.

And, then, suddenly, it's over and the doctor comes in and explains what he did before we're asked to wait for ten minutes in the hallway while they get Sky settled in his room. Twenty minutes later, we are still waiting, so I knock on the door. The nurse says that most parents don't handle seeing their kinds on breathing support well, but she knows how many surgeries we've been through with Ren and tells us we can come in if we're ok with it. I'm more ok sitting with Sky than I am in the hallway with strangers, so I tell her we'll be fine. Like Ren, Sky comes around slowly after anesthesia, and it takes his body even longer to deal with the various meds on-boarded during the surgery.

The lighting in the room sucks--our options are a massive, blinding fluorescent ceiling light or  a depressingly dark headboard light. We wait for Sky to wake in near darkness while tennis continues on the television. When he finally opens his eyes, he wants to know if it's done. He wants to get out of bed. He wants to watch something else on TV. He switches to National Geographic, some show about the Sphinx and the Pyramids. He's still trying to watch it when they come in to do an echocardiogram.

I often wonder if I am doing right by my kids, by Sky, who is my oldest, my practice run, my test case. Every phase he enters, every new challenge he faces, I am doing it with him for the first time. Most of the time, it doesn't go smoothly and I am convinced I am blowing it. But as I watch them track his heart on the screen, I am transported back to the first time I ever saw that heartbeat. Back to that moment fifteen years ago--before I had a baby, before I learned to doubt myself so deeply--when I was simply awed to see that life growing inside of me. Watching Sky's heart beat so perfectly on the screen I am flooded with gratitude--gratitude that I've been able to hold and to love and to protect and to help grow this heart in this boy.

It's his heart, but as I look at it in the darkened hospital room, I realize that it is my heart, too. It always has been.

My heart four days post-op.

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. 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.