I'd hoped we could keep these hospitalizations down to annual events but didn't manage that.
C. suddenly began vomiting copiously yesterday. We tried caring for her at home. On her pediatrician's advice, we tried Pramin suppositories. He said that with no fever or diarrhea, she wouldn't dehydrate overnight.
But the med had no effect. The gushes of liquid vomit kept coming at two-hour intervals. Horrific doesn't come close to decribing that night. By morning, there were strands of brown blood in the vomit so the question of what to do was a no brainer.
So here we are back in the ER, 11 months after C.'s last hospitalization.
So far, she's weathered a chest X-ray and a 12-hour struggle to get urine via a catheter. (An incredibly incompetent nurse couldn't get any urine even though C.'s on a fluid drip. Nurse on the next shift collected it with ease.) Temporary predictable diagnosis: another UTI.
Now I'm at a loss as to how to prevent them. We had to stop giving cranberry juice several weeks ago because it seemed to cause vomiting. Should we now resume that, perhaps in a more diluted form?
Tuesday, October 9
Here we are, finally, in a proper ward (where we waited several hours in the corridor for a room).
No cubicles available, so we're in the corridor |
The doctors have done a diagnosis 180°: UTI is now ruled out, replaced with "some infection, somewhere", possibly gastroenteritis. That may have led to aspiration of vomit and may also have caused the intestinal bleeding we saw in her vomit.
She's still getting IV Controloc (pantoprazole) to prevent a repeat of that bleeding although there's no sign of it anymore, not even in her stools.
Bumped into the neurologist who we believed had dumped us when she ignored our last email around six weeks ago. Turns out she never saw it and is happy to re-enter C.'s life. She promptly ordered a CT and EEG; assured us she'll contact that terrific American neurologist whom we can't consult directly because he doesn't have a practice.
She also decided to search for info re central fevers and told us she learned it's not uncommon among uncontrolled epileptics!
C. is off the IV drip and has begun to eat and drink. She's back on her Vimpat which was only available in pill form. (They had Keppra in IV form is so she's been getting that regularly). But I haven't resumed the cannabis yet.
We've missed hydrotherapy - the highlight of C.'s existence - which takes place on Tuesdays. We may also miss the long-awaited delivery of C.'s new wheelchair scheduled for Thursday.
And here are a couple of gems from the medicos:
Nurse about to finish her shift comes around with next shift's nurse. I hear her mention that she had taken C.'s temperature which was slightly elevated but that she decided against Tylenol. I told both nurses that C. is seizing badly and could actually benefit from Tylenol for her fever. Then the nurse about to leave delivers her pearls of wisdom: "You see, she's seizing badly because her epilepsy isn't controlled. It needs to be brought under control. She needs to see a neurologist." To me: "You should consult a neurologist."
I regret that I didn't ask her: "Why? Do you think she might have epilepsy.?"
Wednesday night, October 10
I witnessed an argument between two doctors at the station which was situated immediately outside our cubicle. I had the curtain open so couldn't avoid hearing one, a male, tell the other, a female: "You're a hussy". The other responded: "Well tell me, do you know the patient's background?" "You ought to tell me it", snarled the guy back at her. "No, you're supposed to know it, " she repeated "Why don't you just do your job?" The guy shot back adding once again, "You're a smartass."
Thursday, October 11
C. will be released today. CT negated anything alarming and the EEG showed no change since the last one.
Thursday night
Home! And, the icing on the cake is the new wheelchair is here too! Here is C. over on the right. Sitting in it for the first time:
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