Thursday, December 18, 2014

No light for C. today

Blogging has been sidelined. I have been so busy with my article about institutionalization in my country of people with disabilities. First there was paring the piece down from over 1,000 words to an editor-friendly 800. Now I need to incorporate the editor's stream of change requests. 

But this morning was particularly distressing and warranted a post to help calm me. C. seized 4-5 times in 15 minutes! That was preceded by a similar performance for the hubby at 2:00 am.

The seizures were severe, her face red and totally contorted, the crying sounds (not actual crying which she hasn't done for years, just constricting of vocal cords) loud and chilling, and C. a white, shivering "dish-rag" after each one. 

And me? Well, surprisingly, after nearly two decades of this, a train wreck. When does the inuring kick in? Just don't say never. 

In the wake of what seemed like status epilepticus, I deliberated over whether to send C. to school for hydro. I spoon-fed her a small portion of food carefully (very wary of aspiration) so I could medicate her with: Clonazepam, valproic acid, cannabis and, for good measure, two Advil capsules (even though she, unfortunately, had no fever). 

By the time she was in the pool, here (above) is what she looked like: relaxed to the point of sleep-swimming.

Racing off now to help my daughter-in-law weigh our grandchild who actually lost weight at her last weigh-in on Monday. This is the baby who was born with aplasia cutis (healing nicely), suffered for ages from constipation (seems to have switched to diarrhea now) and has me worried constantly. Hoping the scales deliver good news. 

1 comment:

Elizabeth said...

Oh, this sounds incredibly stressful and exhausting. I imagine you have little chance to, but I hope you are able to do something restorative for yourself. And I understand the panic and confusion with the weird bout of seizures. They come out of nowhere, don't they?