No silver lining in this cloud

C. wants a drink (explained at the end
of this post)

I haven't posted here for a while because caring for C. has been almost exclusively drudgery, hassles, worry and frustration. Since it's tough to relate the negatives while in the thick of them, I waited for respite to descend but in vain. So now I'll try to blog straight through this cloud.

C.'s pressure sore remains horrific. It's infected, deep, large and persistent. I cringe and shudder each time I re-bandage it. Our dear home visiting nurse instructed me to do that only every two days. But, while I still admire and appreciate him, I've switched to every day.

The makers of the ointment (flaminal hydro) advise to expose and examine the wound every day and to re-dress it when the stuff isn't visible any more. Since C.'s bandage fills with blood and pus within hours, this was a no-brainer for me.

But the sweet nurse seemed annoyed with my disobedience and my panicking. 

Next are the cannabis license hassles. I finally scored a real live voice at the Ministry of Health which told me our renewal license will be at our supplier immediately after the previous one expires.

But there's a major hitch: the dosage on the license - 40mg per kg per day - is way too low. In fact it's lower than the dose I've already risen to. And with the neurologist's approval I had intended to raise it further - perhaps as high as 60mg.

So why had the neurologist requested this dose? She hasn't responded to my email.*

C. is currently staging another of her hunger strikes (here's what I wrote the last time this happened), barely puts the spoon in her mouth and then parks the food there for an eternity. Each meal drags on for ages.

And, the surgeon who will be implanting her VNS (link) warned us that she absolutely must gain weight before the surgery. At this rate, she'll probably lose instead.

Then there are C.'s feet, swollen from fluid retention. She's had this problem before and I know it plagues everyone who spends most of the day sitting or lying down. It usually clears up quickly when I'm careful to keep her legs raised but to be honest, I've neglected to do that of late since they weren't swollen..

The central fevers have been manifesting frequently and C.'s walking hasn't been up to scratch, though I don't believe there's a connection between the two. She often stiffens her right leg and refuses to step with it. I'm forced to struggle to move it forward making the whole effort far more exhausting than usual.

School's about to end - forever

On Sunday, C. officially "graduated" the state's educational system. To mark the end of the academic year, her teacher threw a party. Photo on the right.

In mid-August, the "powers that be" will throw her to the wolves. After that, we have two options. We can either banish her from our home to one of those large, closed institutions that I'm always lambasting. Or we can send her to a "day center" as they're called here where only her most basic needs would be met by some very basic staff members. The staff/student ratio is 2:10 which, I'd say, tells you all you need to know.

Today we met with the school social worker again to discuss those bleak options and the possibility of receiving some therapies at home via our Health Fund.

Now she's a lovely, sweet, kind young woman with what she described as ADD. Her desk is coated with scribbled-on papers that constantly get blown to the floor by the fan. Every time we meet with her, she asks us the same questions, we give her the same answers and she promises to make the same inquiries to the same offices on our behalf. The trouble is she never does and we are always back at square one. I'm reminded of the film "Groundhog Day".

The lobbyist at our local advocacy NGO - with whom I spoke last week (link) - has promised to file a petition to the High Court demanding government funding for therapies and care at home, rather than in an institution.  Toward that end we are hunting for the requisite four other families interested in joining this class action. So far, we've got one. The school's head of therapies has promised to find us three more.

As you see, the good news is currently lying low but at the bottom of the barrel I scraped this up: we're having unseasonably hot weather and C. is always thirsty. I've noticed that whenever she hears me walking over to her, she opens her mouth wide for more water (see photo at the top).

Her mouth stays shut when I'm not in her vicinity. The Hubby and I consider that that a clear sign of some impressive cognitive calculations.

---
* I followed up our unanswered email to the neurologist with a phone call. She said she was taking care of the dosage problem. While she didn't explain why she'd originally requested only 40mg/day, she assured me that she'll now resubmit her request for 60mg/kg/day this time. Now for the bureaucracy budge.

Revisiting the VNS

The pressure sores are exerting plenty of pressure on me these days. Last week the main one seemed on the verge of healing but then did a 180 and looks like this [see pic below] today.

I texted the photo to our dear home-visiting nurse who promptly responded with revised treatment instructions: back to the Flaminal Hydro ointment.

On Tuesday, he came by and diagnosed an infection. He says to continue with that ointment but that if there's fever or increased redness to call him. (Might be a bit tricky with C. frequently running central fevers that are unrelated to any infection or illness.)

Otherwise, C. has been pretty stable, seizure-wise. This could be related  to her raised cannabis dosage. Nearly a year ago, we stopped at 11mg/kg/day which translated into 11 drops of oil three times a day. We were following the neurologist's instructions. But at our visit to her in April (my post), we learned that our dosage was far from the maximum.

(Why did the doctor stop there? I have a hunch she only prescribes the stuff and raises its dosage when parents prod her to.)

In any case, when I suggested raising it this time, she concurred. We're now at 14 drops, 3 times a day (i.e. 14 mg/kg). The doctor said that most patients do best at 15 but that 25 is considered the maximum.

True to form, I'm afflicted with a serious case of optimism again. The doctor didn't give any specifics about the rate of dosage rise so I'm just winging it. Last night, C. seemed very sleep and did her M.E.D.E.K. walking with her eyes closed for the first 20 minutes. I remember that she was also very sleepy when we first raised her to 11 drops.

At that April visit, the neurologist also suggested pursuing the VNS option. So on Tuesday we trekked with C. to this city's only neuro surgeon who implants the VNS. He was very friendly and forthright. Actually, to a fault (the forthrightness, that is). For instance he told us there's no chance that the VNS would improve C.'s cognitive skills. None whatsoever. And that the assurances we were given to the contrary by the VNS distributor's nurse/salesperson were bunk. She had insisted that even where seizures remain unaffected by the device, cognitive improvement was often detected.

His forthrightness even included this self assessment: "I haven't got the most VNS experience in this country but I have been implanting them the longest."

Not exactly a trust-inspiring line.

He went on to assure us that the device was very likely to improve her seizure situation by either reducing their frequency or intensity. (I don't quote statistics, he added.)

But then he proceeded to the risks involved. Since the device currently in C.'s chest (see photo) is obsolete, it precludes simply replacing it and connecting the new one to the old wires. That would have been  a simple procedure done with a local anesthetic.

Instead, the entire device and its wires would need to be removed and replaced - surgery that requires a general anesthetic. In addition, the risks posed by the implant itself include: infection in skin and even spreading to device - which would mandate a second operation to remove it - oh, and a stroke. He said it's never happened to any of his patients.  But still, I'd say.far from trust-inspiring.

See the VNS near C.'s collar bone?

I then asked him for his opinion about the procedure in C.'s case: "It's a doable and reasonable move." he said. He added that while seizure control wouldn't improve C.'s level of functioning "since her brain is already fully developed", it would halt her decline.

The thing is: she hasn't been declining for many years. She plateaued a long time ago. Which left me wondering how the VNS would benefit her. (I actually raised that with the Hubby while there and he sshh-ed me emphatically. He doesn't want the surgeon to suspect that we're less than enthusiastic.)

The surgeon was shocked by C.'s gauntness ("She has zero skin or muscle") and said that were she able-bodied she'd have been committed to the hospital ward for anorexics. We assured him she consumes large quantities of calorie-rich food and we have no clue where it all goes. He was equally stumped. His advice: Avocado. He said that some fat on her bones would  reduce the risk of  post-surgery complications.

Well, that's all the VNS news for now. The Hubby and I have agreed to give the raised dosage of cannabis a chance before deciding about the VNS.

Oh, and when we mentioned cannabis to the surgeon he didn't hesitate before declaring: "I don't believe in cannabis."

P.S. We didn't ask for his opinion on it.

Pesky pressure sores, bad blood and a dream toy

Four layers of treatment and the results of the blood tests

Our ever sweet and competent visiting nurse urged us to test C.'s protein levels. He suspected that low levels were behind her frequent and slow-healing pressure sores.

Well, the deed was done today (very nearly wasn't, actually, because he had a very hard time coaxing enough blood out of C.'s veins and said it was due to dehydration).

Anyway, it turns out that C.'s protein level is fine but several other readings were extremely un-fine. LDL was abnormally high as was vitamin B12. There were a few more abnormals but I can't seem to anguish over all this.  My reserves are depleted so I've pushed this to the back burner for now.

Next week, we have a long overdue appointment with C.'s neurologist and I'll leave it to her to decipher the numbers for us.

Makes sounds, but audio quality
is poor

As for the pressure sore, its progress has been so disappointing that the nurse reinstated it to the first line of treatment.

Another hitch is that the plastic covering over the bandages has itself created fresh sores - something that never happened before.

I've bought C. a new toy which seems to stimulate her to flick her fingers over the buttons in order to elicit animal sounds, names of colors and shapes and music. Unfortunately it's a cheap device and the quality of its sound is pathetic. I dream of one with the same sort of easy-press buttons that produces pleasant sounds. I can't find one for sale.

Does any of you readers know of such a product available on-line?

P.S. Our bottle of THC remains sealed while we wait for the perfect "bad day".

Bed sore is back but a few good days too

Well, the bed-sore honeymoon is over.

The one remaining mild wound which only required this bandage (see below) and the air mattress, grew more severe over the past two weeks. So I asked our health insurance provider for a home nurse visit and that wonderful guy prescribed the three-layer bandage routine.

So today, after hydrotherapy, I re-bandaged C. at school. 

But on the bright side - yes, sometimes there is one in C.'s life - we have been enjoying several of those mysterious near-seizure-free days this week.

As in the past, there is no apparent rhyme or reason to them and - other than briefly noting them to one another - the Hubby and I keep it scrupulously under our chests.  Not even a mention to our other kids.

Because, you know how that jinx works.

As I've written here, even one of our past pediatric neurologists - the department head - warned us never to utter a word about seizure improvement to anyone. Apparently it's some scientific phenomenon, this particular jinx.

So, please, not a word to a soul.

At the top of this post. there's the portrait of a student at C.'s school that's still a work in progress. It's number 5 in the series I'm planning of children at her school.

Then you saw it - now you don't

Finally: our first bandage-free day! At least for the serious bed-sore that's plagued us for about three months [link].

Healed!

Two milder sores need care but less intensive.

I was buoyed all along by the visiting nurse who assured us that, gross as it looked, the wound was actually healing nicely. I was left to reassure the skeptical school staff who questioned the length of the process and were skeptical about its efficacy.

So all of you grappling with bed sores: don't be disheartened. Ignore those alarming Google sites and images. You just need plenty of patience and plenty of these special, expensive bandages - which our visiting nurse lavished on us.

These are photos of the three layers of bandages, and how they were layered:

First the gray flannel

Then the pink foam

And finally the transparent, water-proof vinyl. 

Plus the gels

For the first month, the Octenilin went under the grey flannel. Second month:
the Flaminal. Third month: no medication

And now two blood-building drugs given to premature babies have been found to boost brain development and the IQ ["Two drugs may help improve IQ and brain development in preemies", via Washington Post]. Like the last encouraging drug I mentioned - the beta blocker, propanolol - they haven't been tested on children like ours. But who knows what future studies will yield?

Has anybody tried either of these? I intend to give propanolol a shot because results were virtually immediate. I just need an obliging doctor who'll write the script.

Tomorrow we are off to visit another neurologist; plodding onward in our quest for that elusive diagnosis. At the very least I hope to come home with that propanolol script.