It happened in the bath ... again. The past several seizures that Calvin has suffered have all begun in the tub. This one was very similar to the others—the silence, the twitching, the stiffening, the tremulous convulsions, the vacant staring eyes, his lack of breathing.
I was downstairs removing ash from the wood stove in preparation for building a fire when I heard a faint call from Calvin’s nurse, Bebe. I dropped the metal ash pan on the brick with a sharp clang and sprinted up the stairs. She had him—almost to our bed—in a kind of bear hug, her arms wrapped awkwardly around his thin, stiff body, which was partly draped in a towel. She gently laid him down and I kissed his moist neck tasting the bathwater trickling off slick locks of his hair. “Come on, baby,” I pleaded. Michael joined us and we all caressed Calvin’s quivering body.
As the second-hand approach three minutes Calvin had started coming out of it. I dismissed myself to quickly prepare his evening seizure meds while Bebe and Michael got his diaper and pajamas on. A few moments later I heard Calvin shriek. When I got back upstairs he was howling in obvious pain of some sort, feverishly rubbing his ears and head with a tortuous expression on his face. Could it be a headache? An ear infection? Cramps? Does he need to vomit? Any—all—were possible in the wake of a tonic-clonic (grand mal) seizure. There was no calming him enough to give him his seizure meds, so we dimmed the light, tucked him into our bed and he promptly began to settle, thumb in mouth.
But we had to get those chalky pills in, had no option but to disturb Calvin’s calm. Irritably, he took the first three white dots, all sunk into yogurt, like the dutiful boy that he is. We praised him heartily. The next two and a half sickeningly pink pellets he didn’t swallow, but instead began to cry. I had to tip his head back far enough so the mediciney tincture wouldn’t dribble out of his mouth, yet keep it propped up enough to prevent him from choking. All the while our sweet boy cried bitter tears. I so wanted to join him. Thankfully, he was accepting of a little liquid from the bottle to wash down the dissolving pills. Then we chased them with the last two-and-a-half innocuous looking baby blue tablets plus a few more spoonfuls of yogurt before his eyes became heavy with sleep.
Recently, I’d told Bebe how hard it is to start back at day one after a long seizure-free stint. Yesterday was day forty; today is day one. It’s a bitter pill to swallow, this epilepsy thing, hard not to choke on. It seems no matter how many drugs we dump down our little Calvin’s throat the seizures keep on coming and everyone involved gets sick to their stomachs with pain, suffering, grief, loss and heartache. And, no matter what we do, regrettably, somehow we keep ending up back at day one.
It's astounding what just one share of Calvin's story does to promote epilepsy awareness. Please do so.
Give: http://www.calvinscure.com
I was downstairs removing ash from the wood stove in preparation for building a fire when I heard a faint call from Calvin’s nurse, Bebe. I dropped the metal ash pan on the brick with a sharp clang and sprinted up the stairs. She had him—almost to our bed—in a kind of bear hug, her arms wrapped awkwardly around his thin, stiff body, which was partly draped in a towel. She gently laid him down and I kissed his moist neck tasting the bathwater trickling off slick locks of his hair. “Come on, baby,” I pleaded. Michael joined us and we all caressed Calvin’s quivering body.
As the second-hand approach three minutes Calvin had started coming out of it. I dismissed myself to quickly prepare his evening seizure meds while Bebe and Michael got his diaper and pajamas on. A few moments later I heard Calvin shriek. When I got back upstairs he was howling in obvious pain of some sort, feverishly rubbing his ears and head with a tortuous expression on his face. Could it be a headache? An ear infection? Cramps? Does he need to vomit? Any—all—were possible in the wake of a tonic-clonic (grand mal) seizure. There was no calming him enough to give him his seizure meds, so we dimmed the light, tucked him into our bed and he promptly began to settle, thumb in mouth.
But we had to get those chalky pills in, had no option but to disturb Calvin’s calm. Irritably, he took the first three white dots, all sunk into yogurt, like the dutiful boy that he is. We praised him heartily. The next two and a half sickeningly pink pellets he didn’t swallow, but instead began to cry. I had to tip his head back far enough so the mediciney tincture wouldn’t dribble out of his mouth, yet keep it propped up enough to prevent him from choking. All the while our sweet boy cried bitter tears. I so wanted to join him. Thankfully, he was accepting of a little liquid from the bottle to wash down the dissolving pills. Then we chased them with the last two-and-a-half innocuous looking baby blue tablets plus a few more spoonfuls of yogurt before his eyes became heavy with sleep.
Recently, I’d told Bebe how hard it is to start back at day one after a long seizure-free stint. Yesterday was day forty; today is day one. It’s a bitter pill to swallow, this epilepsy thing, hard not to choke on. It seems no matter how many drugs we dump down our little Calvin’s throat the seizures keep on coming and everyone involved gets sick to their stomachs with pain, suffering, grief, loss and heartache. And, no matter what we do, regrettably, somehow we keep ending up back at day one.
It's astounding what just one share of Calvin's story does to promote epilepsy awareness. Please do so.
Give: http://www.calvinscure.com
I'm so sorry this happened again. Forty days is a long time. If the past several seizures have all started in the bath, is there any possibility that something about the bath is triggering them? Would it be feasible to switch to showers (and a shower chair) for a while?
ReplyDeleteRR Julia
dear julia,
ReplyDeletecalvin does not stand still by himself well, or even with help. he is all go, go, go. a shower chair would be difficult. there is a possibility something about the bath is a trigger but just as likely it is the time of day—a "trough" just before his evening seizure meds when they are at a low point in his blood.
calvin has had a history of having seizures in patterns at particular times of the day. used to happen a lot when he'd wake. then they changed to 10:00 am. last summer they were happening right after dinner time/bedtime. my gut tells me he'd have the seizure anyway, and he LOVES the bath. so few things for my boy to LOVE, you know?
thank you for your kindness and concern. where do you write from?
christy
I'm so glad he loves his bath! When my kids were little they did too. You are probably right about the time of day being the trigger. Would it make sense to bathe him at a different time? IN the bath tub seems like such a scary place for a seizure. But you have thought about all of this--and you know best what is best for your boy.
ReplyDeleteI'm in Houston. I found your site from the Little Seal site. And there is another story that breaks my heart. Don't think I only read sad blogs--I read Chickens in the Road and the Yarn Harlot for example. I think the common factor in all of them is openness, honesty, and a feeling of connection. It does occur to me for the first time that I only read blogs by women. Hmm. Have to think about that.
RR Julia
might be a thought to do bath at a different time. thanks for your consideration! xo
ReplyDeleteoh, christy, so hard to accept after that long seizure free spell. we get lulled into thinking, maybe it's over! it's punch in the gut re-traumatizing, isn't it. my therapist reminded me this week that i have to constantly look at the dialectic of acceptance and change: what must i accept? what can i change? every single moment with lisbeth, every single day. and you with calvin. with all the unpredictability, and all that is out of your control: what must you accept? what can you change? it is so very hard to do the acceptance piece. (still workin' on that one...) xo
ReplyDelete