Finley has a bit of a problem with cussing, with some of his earliest phrases being such decidedly not G rated language like “Dammit, it’s out of batteries.” His latest phrase is calling all persons, places, and things, a bunch of “bullshid.” Normally, I try to redirect his foul mouth down more appropriate avenues (“scalliway” and “horse hockey” are two of my temporary successes), but based on the weekend he had, I’m not that upset at him calling it all “shid.”
Recently I listened to a talk from Thomas S. Monson (yes, I’m going right into that after all the cussing) where he quoted a John Greenleaf Whittier: “Of all sad words of tongue or pen, the saddest of these: It might have been!” I can’t get those words out of my mind, that it might have been. Not that it might have been better, but that it might have been much, much worse.
That’s what really scares the sh. . .I mean, that’s what really scares me.
On Friday night, Amy and I were enjoying her newly changed work schedule by making inroads into a year’s worth of TV episodes languishing on our Netflix and PlayOn accounts. Right around eleven, she decided it was time to turn in, even though I was hoping to get in one more episode.
Fortunately, she won out. As we walked up the stairs, we heard a quiet chattering from one of the kid’s bedrooms, like a playful nighttime conversation with an imaginary friend. It took about half a second for my mind to spin from joy to dread. Neither of our kids would ever consciously stay in their beds alone. If one of them was talking, it wasn’t willingly.
We raced up the final steps and into Finley’s room to find him convulsing on the bed, eyes twitching to the right, an almost rhythmic “um,” bursting from his lips. His sheets and pillow were coated with sweat. We had no way to know if the seizure had gone on for minutes or for the full hour we were downstairs.
Amy quickly called an ambulance while I tore through our cabinets for the emergency medicine. We administered it right away–the doctor said to wait five minutes after the seizure starts, but with no idea when that was, we decided there wasn’t time to waste. Then we waited for the shaking to slow down like the last time we gave him the heavy dose of narcotics.
It didn’t.
The ambulance was there minutes later, and Finley still hadn’t pulled out of his seizure. The EMTs carried him outside, administering a heavy dose of a different narcotic. Finally, at some point between our house and Parker Adventist, with lights and sirens blaring, Finley’s seizure stopped.
His breathing was on the point of stopping, too.
From 11:30 pm to sometime after 2 am, a haggard RT stood constant watch over Finley, doing everything she could to anger him enough to wake up and take a breath. When he breathed in, it was typically combined with crying bursts of annoyance. The doctor and a couple nurses also rushed around, taking blood samples and making calls to figure out what to do. Intubation and a stay at Children’s Hospital PICU seemed increasingly likely.
Then, finally, Finley started to breathe on his own. We stayed the rest of the night in the hospital, Amy in an uncomfortable plastic foldout chair, me in one that had no give. My back still hurts from that days later.
He was released in the morning, not quite good as new, but certainly improved over the night.
So here, of course, is the fear of “it might have been.” What if we had watched another episode? Would he have been seizing another hour? What if we’d turned in early instead? Nighttime seizures had been our fear since the first one happened in March, but the neurologist reassured us that they were rare, typically occurring only as a person slips in or wakes from sleep. Now that it has happen during the night, what do we do to make sure we’re not blissfully enjoying another episode of Stranger Things while our son is in his room fighting for control of his body?
After a couple of sleepless nights, we now have one protection in place, and hopefully another coming soon. We bought a SAMi camera, which detects seizure motions and will sound an alarm during the night. We also bought an Embrace smart watch (though that has yet to ship), which is supposed to sent out alerts on seizures before they happen. If we have another weekend like this last one, we’ll probably end up with a seizure dog.
Finley’s own personal security camera
It might have been a lot worse. Hopefully, it’ll never happen again. Hopefully, the updated cocktail of medicine will make Finley’s cussing once again our proximate concern.
For now, I’m certainly worried–and I won’t deny waking up a million times last night to check on Finley despite having SAMi watching over him. Still, I’m surprisingly calm about it. Sure, there’s a pit of dread gnawing at the back of my brain like a dog at his bone, but I’m hopeful. Plenty of people have grown out of seizures. Maybe in a couple years the worst part of this for him will be when his parents bring out the cute picture of him from the hospital to show to the girl he brings over. That’s certainly my hope.