Friday, June 24, 2016

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.


Elizabeth said...

Oh god, this brings tears of frustration and anguish to my eyes. I am so sorry that you are juggling so many things and so many of them quite dire. I'm appalled that you have no other options than an institution or an abysmal daycare for C. Are there other parents that you could meet/band together and perhaps pool resources for some type of day camp situation? I'm sure you've thought of all these things -- I'm just worried about you, too. And what the hell is going on with the sore? And the marijuana dosing? Refresh my memory -- is C on a benzo still? Many years ago when Sophie was on Nitrazepam (an ancient benzo), she developed fevers that came and went. Do you think those fevers are related to her meds?

In any case, I am thinking of you and abiding with you. If you ever want to talk offline, please email me.


The Sound of the Silent said...

Elizabeth, thank you so much for your commiseration. It's a rare commodity around here where a moan or groan about extreme parenting tends to elicit the "considerate" suggestion of institutionalization.

C. is actually taken care of through the summer since the ministry of education gives 21 year olds a bonus until the end of the academic year. (For special ed. that lasts until the third week in August).

We found out that the cannabis dose our neurologist requested was actually identical to the one we have now. She forgot entirely to raise it!

Next, we learned from the ministry of health that her paperwork arrived "unsigned". Now, I do believe the dear doctor when she wrote back to us that the documents were in fact signed. The ministry in turn says that faxing sometimes erases signatures. In any case, we are now back to square one (presuming our doctor resubmitted everything today as she promised to).

We will undoubtedly be left high and dry for a while. My blood pressure - always problematic - didn't need any of this.

Apparently, bad pressure sores can fester for ages but I am really wrung out from this one. The nurse took a swab to the lab and we've just learned there's a bacterial infection in it. So C. will probably start oral antibiotics today.

C. is, thankfully, entirely benzo free. I realize, having read about Sophie's experiences, that I should be thankful that the weaning was relatively benign. But I had hoped for a bit of improvement in C.'s functioning after it exited her system and we've had no such luck.

Aside from cannabis she only takes Valproic Acid.

I don't remember precisely but I believe her neurological fevers pre-date our introduction of Valproic and no doctor has ever been able to explain them. I am eternally grateful to the inventor of Advil Gel Capsules - paracetamol just doesn't work on her fevers.

I hope you and Sophie weather the summer at home with a minimum of stress and even some fun times. (I just know you'll come up with great ideas for outings). Until what age will she be able to attend school?