11.12.2021

camped out

Yesterday, the tenth day since Calvin's last seizure, he had a grand mal at three-thirty in the morning. This morning at four-thirty, after I had just drifted off since having been wide awake (for whatever reason) from midnight on, he suffered another grand mal. And while a ten-day seizure-free stint isn't that remarkable, it's better than seven days, or four days, or consecutive ones, and/or larger clusters of his brain's electric storms.

I'm glad I went for a run this morning, because the wind is high and the rain has begun falling hard, making it as good a day as any to be camped out indoors. Maybe I'll build a fire, or put Calvin in bed and take a long hot shower, have an afternoon stovetop espresso, write a little. As for Calvin, he is pretty out of it, barely able to get on and off my lap and the couch. With his head covered by his baby blanket (he loves that) it's easy to mistake him for the piles of clean laundry which seem to have taken up residence there. In-between my lap and the couch, he naps on the rug, cross-legged and folded over, his head in his hands, forehead on the floor. It's a sorry sight and reminds me of what a zombie Depakote—one of his first few drugs—made him into when he was just a tot.

Last night, having sensed the second seizure coming, I doubled Calvin's minuscule Xcopri dose with the hope of dodging the bullet (thankfully, Calvin's neurologist and his team are quick to respond to my questions, concerns and requests for help regarding bad spates and new medications.) But a single night of an increase wasn't enough to stop the oncoming storm. I hope today's major lethargy is simply his body recovering from the grand mals rather than a side effect of the new drug. But fatigue is common with most if not all antiepileptic medications, and I've read it's especially true with Xcopri, even at relatively small doses in adults far bigger than Calvin. Sigh.

Tonight, we had planned on having a few covid-negative (rapid-tested) new colleagues of Michael's join us for some of his tasty slow-cooker lasagna, my go-to spinach salad, and the remainder of my chocolate-malt-marshmallow-cookie ice cream cake, but we decided we should cancel since Calvin isn't doing too well. So instead, we'll spend the rest of this dark day camped out on the couch listening to raindrops hitting the widows, cars swishing by through the puddles, and the tick-tock and gong of the wall clock. Around five, we'll get Calvin his meds and tuck him in, make dinner and eat it in front of a movie or fire, and retire early to bed, all the while hoping the storms in his brain will ebb. Otherwise, tomorrow we might find ourselves camped out again on the couch.

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