Sunday, October 14, 2018

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:

Friday, October 5, 2018

Back to hydro - and doctor problems

C. finally scored one hydro session during the month of her therapy pool's closure. I had hesitated to give her one because the water in the available pool - it's the one I swim in - is much colder than C.'s therapy pool. But our past experiences there, about a year ago, usually proved worthwhile nonetheless. 

So with E. and the Hubby we gave it a shot on Sunday. 

The first ten minutes she was tense, limbs bent and unable to float on her own. I was tempted to admit defeat. But eventually she floated independently, kicking slightly - admittedly shivering - but thrilling us all nonetheless for around twenty minutes. 

On the seizure front, we're still seeing somewhat of an improvement with the raised Vimpat dose though not the sort that halts the hunt for better control. 

But for now we're occupied with trying to get a neurologist to submit the paperwork required by our health fund for renewal of our Vimpat authorization. It expires on November 24th and the paperwork involves a neurologist filling in forms along with numerous other signatures, a time consuming process. 

The problem is we're getting the email silent treatment from the two neurologists who have most recently treated C. One is the doctor who recommended adding on Frisium while also recommending that we see an epileptologist since epilepsy isn't her area of expertise (she's a headache specialist!) We notified her that we'd heeded her advice re an epileptologist but not the Frisium tip. We were pleading with her to contact a senior neurologist who had helped us immeasurably in the hospital last year. 

No response from her. Apparently she had her heart set on C. getting Frisium - which would have brought her ant-epileptic tally three! (Excluding cannabis.)

The second neurologist ignoring us is the epileptologist we first saw last month - and paid out-of-pocket for the privilege. She is the one who urged us to raise the Vimpat dosage. And now she won't help is out with the Vimpat authorization paperwork!

Is there something in the water these neurologists drink that makes them so heartless?

Friday, September 28, 2018

Nieces, nephews and one huge hare

C. joined us at her niece and nephew's new home on Tuesday. I wish we could bring her more often to family gatherings but the Hubby's aging back isn't amenable to that.

The highlight of the Tuesday's visit was C.'s tete-a-tete with the latest addition to my daughter's family - "Rabbit" (no name yet). Her hutch is stashed in the utility room and she never ventures out on her own so I had forgotten all about her. Fortunately I remembered her in time for C. to enjoy a lengthy pet therapy session. 

Here she is with what I'm certain is a look of concentration and intrigue:


Her nephew is in the background looking adorable as always. 

There were other nieces and a nephew in the room and I have no doubt their noise, laughter and action benefitted C. immeasurably.

And this news is strictly confidential: C.'s seizures increased immediately after I added the extra 50 mg of Vimpat to the morning dose one week ago. (I had increased the night-time dose 2 weeks ago). But three days later she settled back down to about three a day, with only one bout of fever and seizures. Could it be her body needed to adjust to the Vimpat change?
 
Remember, seizures have been Scientifically Proven Susceptible to superstitions. So improvements are definitely not to be circulated.

Sunday, September 23, 2018

I wanna hold your hand

I haven't written about C.'s occupational therapy sessions which have been ongoing for two months. 

A few weeks ago we had one fiasco with C. in the throes of a string of seizures when the therapist arrived. (I had called to notify her but she was already on her way). 

Since then, though, we've had a few productive ones. 

Here is C. (above) getting her ligaments gently stretched at the session's start to maximize her range of movement:

And here below she is working on gripping an object while therapist, N., shakes her hand. 

She is improving at closing her hand to grasp an object and then, on demand, opening her hand to release it.

Modest goals, but enthusiastic responses from all three of us - the therapist, C.'s caregiver, E. and me. You've got to admit, we're a realistic bunch.

We had about two weeks of relative relief from seizures (i.e. only about three a day) which I attributed to the rise in the nighttime Vimpat dose. 

But here we are, after raising the morning dose too and the seizures are back with a vengeance. 

We still haven't managed to check the Keppra blood levels so maybe therein lies a solution. The HMO nurse tells us that test will only be available in about a week. 

No hydro photos because the therapy pool is also closed for a few weeks. 

Excitedly awaiting delivery of the new wheelchair on October 8. 

Sunday, September 9, 2018

New neurology nightmares

Last week, we went to a new neurologist who specializes in epilepsy. Here is C. at the hospital while we wait to be admitted to the doctor's office:

We had to pay out-of-pocket because in the public clinic, the earliest appointment with her was April 2019. But C. is doing so badly seizure-wise that we felt this was urgent.

The doctor gave us an hour and a half during which we covered C.'s history, symptoms and functioning. Afterward the doctor gave us her thoughts and recommendations. This probably sounds rather routine but, trust me, in our experience, it's a rarity. We really felt that we got our money's worth.

Of course, that's not to say we left her office uplifted. There was much for us to digest and ponder. So here goes:

Med changes

First, she recommended raising one of the two anti-epileptics C.'s on: the Vimpat by 50 mg/dose. I already did that tonight. In two weeks we raise it in the morning as well. She said the current dose is considered low. Who knew?

She also advised doing a blood test to check the level of the second drug she gets, Keppra. The current dose of that drug - 1,500 mg twice/day - is also deemed low. Likewise, who knew? Our previous neurologist never told us that. In fact, at our last visit she had recommended adding a third anti-epileptic! Frisium! That's one of the benzodiazepams that rendered C. semi-comatose during her hospitalization back in November 2017 

Btw, that incompetent neurologist never bothered to answer our last email. In it, we mentioned, inter alia, that we did not add the third med, Frisium, as she had instructed us to do. I suppose she wasn't too pleased with that. Back to the new neurologist:

Video EEG

We've never done one and she'd like us to. So some time in the coming weeks, C. will be hospitalized for 24 hours. Here's hoping we glean some helpful revelations. Our HMO has already authorized the expense.

C.'s frequent fevers

She wasn't impressed with the exclusion testing that C.'s pediatrician did. As I've written, he did a thorough clinical exam and blood test before concluding that the fevers she's now getting - they max at 100.6 rectally - are not caused by an infection. Ergo, they must be central.

This neurologist said that those exams weren't enough to reach that conclusion. She said she's seen patients who seize more than C. but never get central fevers. She suspects there could be some underlying condition, perhaps related to her life-long thinness, triggering the fevers. She said the pediatrician should have referred us to a specialist - she couldn't specify but threw out endocrinologist and gastroenterologist as possibilities - who could run tests to determine whether in fact there is another cause for the fevers. 

Whew, not exactly an inviting task.

VNS

She strongly urged having a new VNS implanted. The one inside C. dates back to December 1999 and never helped her one iota. She advises trying it again. Of course, this time we'll have somebody better equipped to calibrate it afterwards. 

Back in the year 2000 there wasn't any such expert in this city. (I know, I know: so why did we implant it then anyway? That was just another of our many blunders.)

But removing this old one isn't straightforward we've been told because the wires are coated by now with skin - or something along those lines. Also, the last neurologist who pushed a VNS replacement was the one who destroyed C.'s liver with Valproic Acid but refused to own up to it. Instead she pointed a finger at the cannabis! Which brings me to this new doctor's take on - 
Cannabis

I had braced myself for negativity so I was relieved when she just told us that C.'s CBD dose is very high. Which would explain why the government authority refused to renew our license for 11 bottles (= 100gm) per month. Instead we were given one for only 10 bottles.

She said C.'s current dose would be more efficacious in the form of vapor. It's absorbed far more quickly than the oil C. now takes. I haven't gotten around to inquiring about the availability of this form at our supplier. My hunch is we'll need to switch to another supplier (the one that the doctor recommended); not a process I relish.

Hydro

This week yielded a brief respite from frequent seizures and fevers during an extra long hydro session where C. just rocked. The proof is in the photo above.

Thursday, August 30, 2018

Progress on the wheelchair front

Wheelchair tryout
I am thrilled to report progress this week on the wheelchair front. 

We've endured C.'s current one for some six years. It was the concoction of the so-called seating expert at C.'s old school who selected it and all its accoutrements single-handedly. And believing her title was deserved, we blindly followed her advice.

It was clear from day one of C's sitting in it that our "expert" was actually clueless. After every seizure, C. slides down. Like this:

Sliding out of her current chair

And even when calm, she gradually slides down over time. When the Hubby is out of the house, I am forced to leave her in that uncomfortable position because I'm not allowed to lift her weight (lest I wreck my pelvic organ surgery).

So we're all eager to finally acquire this new Italian wheelchair which promises to prevent sliding via its slight tilt backwards. 

According to the importer's rep, who brought a demo chair to our house, this tilt will also readjust pressure spots, thereby relieving to the ones that are normally plagued. He assured us there's a good chance we'll have the new wheelchair delivered by the time the Hubby leaves for his brief overseas trip in November. Hoping hard.

On the swing front, no such good news. The local person we've been referred to by the overseas manufacturer is on vacation now. But an associate of his told the Hubby that in the past they've encountered opposition from another municipality, similar to the sort ours dished out - see Frustration overflow.
Hydrotherapy - notice the tip of her tongue

Her impression was that some folks there simply don't want children with disabilities frequenting their playgrounds.

I managed to attend C.'s weekly hydrotherapy session yesterday.

Normally, I'm with grandchildren at that hour so E., her caregiver, is with her on her own and sends me photos and videos. But seeing it in real time is such an very uplifting experience. The pool is still the only venue in which C. thrives.

Yesterday she seized right before entering the pool and right afterward. But during those 35 minutes of floating, she was the epitome of calm and contentment. We were even treated to several of her "smiles" - the tip of her tongue sticking out as the photo above shows.

Thursday, August 23, 2018

Why my daughter stays at home

I've been learning about my fantasy adult day program. Turns out, it is a reality in LA for young adults like C. I'm happy for my blogger-friend, Elizabeth, whose daughter, Sophie, was admitted to the program after a wait of over a year.

But reading about it also makes me apoplectic. I mean, why don't we have something even remotely similar in these parts?

When C. was about to "graduate" at the age of 21, her school told us about three day programs available in our city. The Hubby and I visited one of them together and he checked out a second. We were the told the third was similar to the one he saw alone. How would I best describe them all? 

Beneath all contempt.

It was a no brainer - we chose to keep C. at home. But, while we knew that none of the programs provided even the basics we didn't have a clear vision of what they could and should offer. Now, after reading about the one in LA that Sophie attends, we do. 

But before I share those details, here was my reaction to the one I checked out:

Mea culpa
I dutifully submitted to a tour of a day center for adults with disabilities. It's the one that seemed to be the least of the three evils available in our city.

The social worker at C.'s school escorted us and the Hubby drove since I was still wary of taking the wheel after my cataract surgery. It was his second visit to the place and he had earlier conveyed to me in no uncertain terms its awfulness. The idea was to forget all that and assess it with an open mind.


Despite serious efforts to do that, I was, by the end, to put it delicately, very unimpressed. Both by what we saw and what we were told by the director.

The small room we were shown was filled with eight people sprawled out on thin mats - young women C.'s size and age side by side with middle aged men. Two aides were on duty. That translates into two mere mortals changing the diapers and clothing, escorting to the toilet whoever is capable, and feeding two meals per day to eight entirely-dependent individuals.

Needless to say, that is a totally consuming challenge even for two highly trained employees. And these aides by no stretch of the imagination fit that description.

So there isn't a snowball's chance in hell that they could find the time, energy or desire to do what the director assured us they do - namely, to exercise their charges throughout the day according to instruction they've received from the physiotherapist

Now I fully understand why the director told us that tall tale: Because there are only two physio-therapists for the entire center who give each charge a half an hour of therapy per week! When I told her it's a shame that her center is so under-financed and wouldn't it be wonderful if the government subsidized it as generously as it does institutions, she said: "It wouldn't help. Because it isn't a question of finances. There's just a dearth of therapists willing to work with people as disabled as these."

I posited that a generous salary would undoubtedly entice more applicants. Made no headway.

In any case, on both this and the Hubby's previous visit, everyone in the room was lying down on mattresses in mid-morning. Unlike the last time, there was a row of lit candles in the aisle which, we were told, had been placed there for the "yoga session". Hmmm. I have my doubts about yoga and people with disabilities like C's.



And now to explain my mea culpa:

On our way out of the room, and in direct contravention of the Hubby's request, I took a photo of the class. A second after we left it, one of the aides summoned the director back in and tattled on me. The director chastised me and explained that it's an invasion of the privacy of the people cared for there. I showed her the photo which features no faces.

She was appeased, didn't demand a delete and in turn reassured the aide.

I was then rebuked by the Hubby and by the social worker who both maintained that I had, in effect, been magnanimously invited into somebody's home and had betrayed their hospitality. The director would now be suspicious of my intentions in visiting there and would fear my going to the media to report on the visit.

I apologized to everybody but did half-heartedly present this contrary view. The day centers are a service offered by our government. So why forbid a visitor's recording of what's happening behind their closed doors. After all, the charges cared for there are incapable of that. And oral testimony on its own isn't worth very much; it's so easily denied. With faces absent or blurred, where's the crime in a photograph?

Readers, what do you think? I'd appreciate your input.

In LA, the personal aides are assigned to each participant. Home caregivers are invited to help in their training. The participants who are capable, do community volunteer work. Those who too impaired for that, are taken via public transportation on day trips to museums, parks and beaches. They also receive a range of therapy sessions and coaching in Daily Skills. Then there's the socializing with fellow charges. Need I say more?

One added detail: it's publicly funded. And while our government's fiscal situation is dire in comparison to LA's, it does somehow manage to subsidize several large, closed institutions to the tune of thousands of dollars per resident per month. While those who remain at home with their families are fed the crumbs of abysmal programs like the one described above.

Tuesday, July 31, 2018

Time for a new neurologist

We visited C.'s neurologist last week. 

Just a reminder: this doctor was on the team that rendered C. semi-comatose with a barrage of drugs in November 2017 to combat her status epilepticus. Her specialty is the treatment of headaches. We had no clue about that when we began bringing C. to her. She came highly recommended by C.'s pediatrician.

At this latest visit, we related C.'s fever and seizure woes to her and showed her a video of C.'s aquatic skills. We noted that the raised dose of Keppra and the addition of Vimpat, which has been C.'s regimen since hospitalization, has left her in the same state she was in pre-hospitalization. No improvement whatsoever. We'd like to try her on Keppra alone again, we said.

The doctor then told us we ought to consult an epileptologist. For me, that translated into: "This case stumps me; it's not my field of expertise. Try an expert." No news to us. But we reminded her that the neurologist who helped rescue C. from that near-coma in 2017 and is a colleague of hers, advised us to use her as a conduit to him. We can't consult him directly because he doesn't have a practice in this country. He earns his living from home by assessing scans from overseas patients and advising treatments. And then, once a month he spends a week in the neurology ward where C. was hospitalized last year.

After the neurologist assured us she would seek that other neurologist's input, she added, almost as an afterthought: "I have a feeling that the Frisium we gave her in the hospital would help her. Add it on." 

The Hubby noted we don't want any more benzodiazepams in C.'s life and inquired whether Frisium is in that drug category. The doctor conceded that it is - but that "We'll start her on a low dose and raise it very gradually so it shouldn't cause her to be sleepy the way it did in the hospital".

"Sleepy" is a generous term to describe C. in the hospital. As I can't overly stress, what she most closely resembled was semi-comatose.

The doctor claims her goal is to rise to a therapeutic level of Frisium and only then begin to wean her off Vimpat. She left us with instructions on introducing the Frisium. But none for the weaning of Vimpat.

Needless to say, we haven't filled the prescription for Frisium and have booked an appointment with that specialist epileptologist.

It's nearly a week since the visit but no word from this neurologist about her consult with the other neurologist. I didn't really expect her to, though.


Through it all C. has somehow managed to advance her walking to this: here (above) is some evidence from a few nights ago.

Sunday, July 29, 2018

This terrific therapy needs a new name

To be perfectly clear, even in my wildest fantasies I don't see C. acquiring any sort of occupation. 

But, misnomer aside, we finally re-introduced Occupational Therapy to C.'s regimen this week. She hasn't had it for years. Even while still in school, she rarely received any and never with positive results to show. 

We've been accepted into a pilot project sponsored by a local organization which provides participants with a personal basket of therapies selected by their parents and funded by the sponsor.

The therapist we selected was the only one we could locate in this city who gives receipts and was willing to work in our house. 

I was initially disappointed when she entered on Monday evening for the first session: Young, bubbly, her mouth emblazoned with dark red lipstick, she didn't appear up to the challenge. But that impression dissipated seconds later when she warmly approached and addressed C. 

She first spoke the local language. But when I pointed out that C. hears English almost exclusively, she switched to that with ease - though she is far from fluent in it. 

She took a history, examined C.'s arms and hands, noting what she termed their "surprisingly good condition". Then asked me what C. is capable of doing with her hands. I showed her C.'s pointing for "yes" and putting a spoonful of food to mouth. She gave the performance rave reviews. Despite my engrained cynicism, I really believe her praise was genuine. 

Oh, and while I prepared C.'s food for the eating demo, the woman grabbed the opportunity to have C. pop some balls into a cup.

Finally, she laid out her goals for C. Four very modest, realistic skills she plans to try and impart. She warned me that they will take time and perhaps only half will be achieved. I think she was amazed by my enthusiastic response.

Tuesday, July 24, 2018

The swing

Our swing project is progressing in slow motion. The Hubby spoke to the inventor/manufacturer who is based in another country and who said he would find us a contact person in our country to proceed with it since the guy we were originally referred to has no interest in this project. Evidently not enough cash in it for the local fellow.