On vomit and the vicissitudes of hospitalization

Sunday, October 7

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.

The EEG

Wednesday morning, October 10

Back on the drip because after a batch of heavy seizures, C. was unable to eat and could drink only a bit. A CT was done this morning. Not clear why it was ordered but haven't heard any results yet in any case. UTI has been ruled out even more emphatically today. It's not looking as though we'll have C. home in time for the wheelchair delivery tomorrow.

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." 

Help, many lives are in the hands of these nincompoops!

First seating

That same male doctor had earlier declared when the Hubby approached him: "Whatever you're about to say I'm not interested unless it's urgent. I only deal with urgent matters."

Thursday, October 11

C. will be released today. CT negated anything alarming and the EEG showed no change since the last one. 

While she isn't eating or drinking much, I nixed the nurse's suggestion of a feeding tube. On Tuesday, a speech pathologist assessed her swallowing skills and they passed muster. So I figured it was best to just persevere with feeding by mouth. The less intervention, the better.

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:

Febrile fun and games

C. kicking really well during
last week's hydrotherapy session

C. has been quite unwell these days.

I always feel ridiculous describing her that way when the fact is she is always "quite unwell". But what I mean is she's been running fevers of over 39° C and vomited several times yesterday.

Needless to say, to cap it all off, there were seizures. But, oddly, the seizures weren't any more frequent than with milder fevers. In fact, they subsided without the lowering of fever.

So today she'll be checked by her pediatrician who will tell us whether she can go to hydrotherapy. Tuesday is the one day that our local therapeutic pool admits females. We are all eager to see her in the water, the only context where she flowers.

Last week, while back floating, she kicked vigorously with both legs for the entire session!

Still no word from the local Liberty Swing distributor who promised us he'd deal directly with the reluctant municipality.

And still haven't located an Occupational Therapist or a Speech Therapist experienced in cases like C. who gives receipts. Without names we can't proceed with the pilot project we've been accepted to. The idea is to provide C. at home with the services and therapies she would receive were she warehoused in an institution. Currently, in this country, she can't.

UPDATE: After a thorough exam today, the pediatrician has declared C. fit for hydro. While he couldn't find a cause for her fevers, he recommended doing some blood readings, testing her urine to eliminate UTI and having her elbow wound seen at the wound clinic to eliminate infection. He doubted either is causing the fever. If the tests prove negative, we'll be left with a diagnosis of neurological fever that has climbed higher than ever before. Did I really believe there were improvements on the horizon?

Fever, stress, vomit. Life.

True, we might have gotten bored with the same old, same old. I mean profound developmental impairment both physical and cognitive, central fevers, cortical blindness and refractory epilepsy. They might not have kept us on our toes. So, it's understandable that we've now had retching and vomitting added to the mix.

It's been nearly two weeks since those new symptoms debuted. Last week's exam by the pediatrician didn't explain them so we did blood tests on Monday. We also consulted by email with the neurologist..

The pediatrician - who has kindly acquiesced to keeping C. on despite her nearly 23 years - thought that perhaps one of C.'s anti-epileptics is the culprit. The one added on last is Vimpat/Lacosamide. I recall that the neurologist who saved her from a near-coma during her last hospitalization said then that her Vimpat dosage was too high. But he ultimately left that unchanged because she recovered just by his removal of several other drugs that the hospital team had been administering her.

But the neurologist treating C. now - a member of the above hospital team - dismisses that theory.

The Hubby and E., the caregiver, are convinced that phlegm is to blame for the vomiting. But I'm not. She just shows no signs of phlegm, doesn't have a runny nose and isn't coughing. Besides, she's never vomited from a cold in the past.

We also emailed the gastro who had prescribed Carnitine to repair her liver when it was damaged by the Valproic Acid medication. She's been taking 250 mg. of it three times a day for over a year. Then this past weekend we went away for 24 hours with the entire family. I forgot to pack in the Carnitine and C. did not seize, vomit or retch the entire time.

So I hoped we'd found the cause. But now, after receiving the gastro's OK to stop carnitine, it's clear that was wishful thinking.

So the mystery of the vomiting remains.

C.'s Central Fevers have also increased in frequency and are stumping everybody as well. Her neurologists don't seem to have experience with them at all. In fact, while C. was last hospitalized one of the doctors posited that we have it all back to front: the seizures are inducing the fever.

Now, that's such a presposterous hypothesis, I can't decide where to begin debunking it. One, C. also has seizures without fever. Two, when she has a fever with seizures, they stop once the fever is lowered. Three, central fevers are a known phenomenon. I didn't invent them. But nobody on the team was listening.

I'm hoping that our neurologist will be able to track down a doctor who is familiar with central fevers. We plan to meet up with her for a face-to-face consult next week, something I'm not eager to do since the last time we spoke, in the hospital, I sensed she wasn't enamored with my ideas. (They tended toward pleading for lowering the meds, asap).

In the meantime, it's just stress, stress and more stress. Here's a self-portrait in the works that illustrates that.