Wednesday, November 29, 2017


At last, C. is out of bed and able to be wheeled
around the ward

Well, this discharge is proving elusive.

Saturday was pretty disappointing with C. extremely sleepy, even lethargic. The IV fluids were discontinued in the afternoon to test her capacity for drinking and eating enough by mouth. It didn't look promising, as she clamped her mouth shut in response to the spoon and bottle.

Nightime brought the icing on the cake - copious vomiting immediately after a small meal I'd coaxed into her.

The junior neurologist ordered blood tests and a chest x-ray without delay although C. had no fever or cough. She didn't say why. But our next-door neighbor, a pulmonologist, later explained that it was a routine procedure to rule out aspiration of vomit. It would have been nice for the neurologist to note that.

I went home to sleep, consumed by guilt over her vomiting - which everyone intimated was my fault. (While the hubby stayed in the hospital as he's been doing every night. Yes, I know, he's a treasure.)

The following morning I awoke to a WhatsApp message from him that read like a hallucination:
"The resident for this coming week is Dr. J.K. He was here now with Dr. L. and Dr. M. in tow [two more junior neurologists who have been treating C. until now]. He agrees with everything you say. He's immediately taking her off Phenytoin as the first step in reducing the drug regimen and getting her out of the current apathy/lethargy. Next culprit in his eyes is Vimpat of which he says she's getting too much for her size."
C., now off Frisium and Phenytoin, has been progressing in baby steps. With my maternal magnifying glass, though, they appear as giant leaps.

For instance, she's begun opening her mouth for food. And when we wheeled her around the ward tonight for the second time, she lifted her head more frequently than she did last night.

And, of course, equally significant, the seizures are infrequent and mild, thank heavens. But you know the score: keep that one hush, hush.

This godsend of a neurologist departs the ward at the end of the week for overseas where he works over the next three weeks. He's promised to be a consultant for C.'s care via her regular neurologist - who was his student once upon a time. But it remains to be seen how that will pan out.


Elizabeth said...

My fingers are crossed. These kids with seizures are over-medicated, plain and simple. My mantra is now, ENOUGH.

The Sound of the Silent said...

Thanks! And please know that you and your blog taught me this approach to anti epileptic meds. So keep on spreading the word!

Ajax said...

Getting off Frisium *is* a giant leap. Phenytoin is pretty awful too. Thank goodness for that news.

Wha? I'm so sorry you were made to feel *you* were responsible for the vomiting. If anything, i'd bet it was the pharmaceuticals they inundated her with, not the food. (Vimpat makes me really nauseous.)

Yes - mum's the word on the seizure front. Best.

The Sound of the Silent said...

I actually ventured the suggestion that the flood of drugs induced C.'s vomiting but the neurologist didn't even respond. Later, I noticed when she spoke to us, she looked only at the Hubby, not once at me. Reminded me of Elizabeth's apt phrase: "tiny little mother mind". Thanks for the warning about Vimpat; so far, we haven't seen signs of nausea.