Sunday, August 21, 2016

To stop me from twiddling my thumbs

We came home from our HMO's fund's wound clinic (who knew there was such a creature?) with a laundry list of tactics to trounce the pressure sore plague.
  1. The medicine and bandages we've been using were replaced with totally different ones that I must change twice daily (instead of the previous once). The new bandage is just several layers of gauze drenched with iodine and  taped down over only one corner which we alternate at every change. (All the plastic layers we used were irritating the surrounding, healthy skin). It's in the photo above.
  2. A swab was taken from one of the sores for culturing - must call back in several days for results when we'll adjust antibiotic accordingly.
  3. In the meantime, a course of antibiotic - ciprofloxacin.
  4. Bring C. to a gastroenterologist to figure out why C.'s albumin dropped recently to sub-normal levels. (Low albumin contributes to poor wound healing.)
  5. Consult a dietitian for tips on how to boost albumin levels dietarily.
  6. Make appointment for HMO occupational therapist to visit home and assess C.'s sleeping and sitting equipment. Then, per her advice, order a state of the art new mattress and a new wheelchair - Health ministry will subsidize the purchases if it's done this way.
    Change C.'s position every two hours, including during the night. (Confession: I don't do that; I find uninterrupted sleep just too tempting.)
  7. Do not use C.'s brace for several days - nurse raised that to a week. I gulped, panicked and pleaded with the doctor to permit its brief use daily. I emphasized that without any standing or walking, C.'s quality of life will plummet. He immediately acquiesced recommending I cut a ring of foam padding to place around the foot wound. Moral of that exchange: don't accept unreasonable Dr.'s orders as gospel.
  8. Get a new brace.
The doctor and nurse  at the clinic were incredibly kind and considerate both to us and each other. Yes, you read that right: the doctor and nurse worked as a team. It was a first for me.

With the hubby boarding a flight tonight to his hometown for his mother's funeral, most of the above tasks will on the back burner for a while. 

Here (above) I am sharing C.'s pressure sores with that impressive team at the clinic.

Sunday, August 14, 2016

Still plagued by pressure sores, C. graduates

The inflatable mattress overlay I mention in the post. The cylinder
on the right is both container and pump.

The pressure sores are sprouting like mushrooms after a rainstorm. I now spend 40 minutes daily re-bandaging six of them, with one a double header. Every small sore  blossoms into a whopper.

So I finally contacted the pressure-sore expert whom our pediatrician had recommended (yes, at 21, C. is still in his care; more on that later).

He was very responsive, requested photos of the sores, ordered fresh blood tests along with a visit by an occupational therapist in order to have C.'s sleeping and sitting equipment evaluated.

While in waiting mode, the Hubby took C.'s malfunctioning air mattress to our equipment lending center for replacement. He was told that it was actually a useless model and we were upgraded to the inflatable mattress overlay in the photo above (from here).

We were also told by the expert there that we must limit C.'s time in her wheelchair. She should  be seated only for meals, spending the rest of the day either lying, standing in a stander or sprawled in a bean bag. Live and learn.

But until we can get that new equipment, she still sits quite a lot in her wheelchair.

Today, still awaiting a response from that kind pressure sore doctor re the photos and blood results, I called his clinic. Lo and behold, the kind doctor has disappeared on an overseas vacation that will last until the end of the month but didn't bother to share that with me five days ago.

So I made an appointment with his substitute for this week and will update afterwards

Along with the pressure sores, we have embarked on life with C. at home all day. Here she is last Thursday at the end of her final day of school:
C. on her last day of school

Many people we know - good, well-intentioned folks, some close friends others staffers at C.'s school - have asked us why we aren't putting her into an institution and they all specify one. It's actually a chain of large, closed institutions scattered throughout this country that is highly regarded by the general public and lavishly funded by our government. I've grown weary of delivering my anti-institutionalization lecture. So sometimes I just say "no" and skip the explanation.

It's getting tiresome and infuriating. I mean, when will this society get it? A child isn't somebody you evict and dump on strangers because the going got rough.

Just a year ago, our major concern with C. was the intense summer heat and dehydration which landed her in the ER overnight. Ah, for the good ol' days.

And on a positive note, here's a tour of a stunning playground designed to cater to the needs of children with severe disabilities: Perhaps we can all use this as a model for a neighborhood playground that our children could enjoy.

Wednesday, August 3, 2016

Tackling the tooth delay

C. in the dental clinic's chair
We finally left a dentist's appointment for C. un-cancelled. So, yesterday, a year after her last visit, her neglected teeth were examined and cleaned.

Another one of our daughters, the dear-near-dentist (she's in the midst of final exams) had a look at C.'s teeth two weeks ago. She was horrified by what she saw and kindly shared it all with me. Most scary was the wiggliness of C.'s front lower teeth, caused by her receding gums and her almost incessant teeth grinding.

The receding gums are in turn caused by yours truly. For years now, I've been happily brushing with this toothbrush
which I first touted here back in February 2013.

But all good - and easy - things must come to an end. It seems that that design doesn't clean the gums of larger teeth like C.'s. So on my dear-near-dentist-daughter's advice, I have just switched to a Paro brush. Now I find it impossible to brush all of C.'s teeth thoroughly with it. She fights me - pun intended - tooth and nail.

Well, at the dental clinic, it was suggested I tackle that challenge by either:
  • Taping together a pile of  tongue depressors and placing them in one side of her mouth. Or
  • Taping together two rubber wedge-shaped door stops, piercing the end of one and threading thread through that hole to enable quick removal at the first hint of swallowing by C. I kid you not!
I think I'll just keep struggling to keep C.'s mouth open by hand.

Now, to prevent the tooth grinding, the dentist suggested we purchase a custom-fitted mouth guard that she can wear day and night.
And finally, dear-near-dentist-daughter also urged me to have C.'s teeth x-rayed - something which has never been done. She said they can't be accurately assessed without them.

I dutifully requested them yesterday. But I was told that C. would probably not cooperate without somebody's intervention. Sure enough, when they tried, that's what happened. Since I wasn't willing to expose myself to the radiation in order to hold the film in place, we skipped the x-rays.

So, once again, C. was declared cavity-free. But, once again, we can't be sure she really is.

Sunday, July 31, 2016

While some mock, others rock

If you share my sentiments about Trump and disabilities then you too have been wondering how his egregious mimicry of a journalist with disabilities back in November 2015 was so hastily forgotten. And you will no doubt also be pleased with this poster that is being disseminated by my favorite blogger.

I would add:
And never forget Trump's lame claim afterwards [New York Times, November 26, 2015] that he had never met the reporter, Serge F. Kovaleski, who has arthrogryposis which limits the functioning of his joints.
“I have no idea who this reporter, Serge Kovalski [sic], is, what he looks like or his level of intelligence,” Mr. Trump said. “Despite having one of the all-time great memories, I certainly do not remember him,” he continued...
(Don't know about the memory, but that's undoubtedly one of the all-time great comb-overs/toupees he unabashedly sports.)

A commenter at Elizabeth's blog aptly responded to my comment about how in the world this pathetic behavior was deleted so quickly:
It's not been purged. It's worse than that Most people don't care is the very sad thing about this. Also a reality check. [Rebecca Yourig - July 25, 2016]
Blogger Sandrine Ciron: founder of Fashion Handi
But don't despair about our society as a whole. The intolerant contingent is undoubtedly on the road to extinction even if the pace is so slow we seem to be standing still.

Out of France comes a heartening story about breaking down the barriers of exclusion because of disability.

The second Fashion Handi show demonstrates that plenty of people are ability-blind. You can learn more about the woman with CP who came up with the concept of a fashion show featuring able-bodied models appearing together with models with disabilities. One of them - a man confined to a wheelchair who designs sleek wheelchairs explains: "To be proud of your chair, that's the goal".

Also modeled at the show are trendy clothes adapted to the needs of people with disabilities such as jeans with higher backs, zipper-free opening flaps, smoother seams and elasticized waists.

There's more here. And a YouTube clip here.

Friday, July 15, 2016

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.

Thursday, July 7, 2016

Medical cannabis update

I just learned from the ministry of health that we have been issued a "newer new" medical license. This one authorizes 60mg per kg per day, up from 40. Perhaps this news is related to our email to the ministry's complaints department pleading for a speedy response, perhaps not. Who cares? We can now proceed with raising C.'s dosage in our pursuit of better seizure control. Hurray!

On excising pressure sores, cataracts and the R-word


Cataract removal in medieval times [Source]
C.'s sundry wounds - cropping up in all sorts of unexpected spots - have practically turned me into an RN. 

We had just put her on oral antibiotics for the big whopper when we noticed at shower time a fresh and grotesque injury on her foot. She has been wearing the same brace on that leg only, and without any problems for years. So, needless to say, I suspect something happened at the hands of the school staff. But without proof, there's nothing to be done.

In any case, we were contemplating (and dreading) a trip to the ER but first consulted with our neighbor/friend/pulmonologist. He told us we would only need the ER in the case of a red line creeping up C.'s leg or a fever. It was a welcome reprieve.

Now, after 4 days of cephalexin, I can thankfully report to say that both sores are healing nicely and C. is even able to walk a bit. 

In the midst of that pressure-sore mess and stress, I indulged myself with a bit of cataract surgery.

Now, in the post-op period with 11 eye drops per day and no bending, lifting, swimming or touching the eye, sleeping with an eye shield and NO MASCARA, I'm determined to delay my second eye's surgery for as long as I possibly can. 

Just before the above health issues erupted, we were visited by the sweetest, kindest elderly woman you can imagine. C.'s teacher had recommended I call her to find out whether she could help us stimulate C.

Now this woman has spent her entire adult life as a special ed teacher and lecturer to students in that field. But since retirement, she has spent much of her time designing and fashioning activity boards for blind and multiply handicapped children. She first visits them to assess their needs and capabilities and then produces a custom-made, zero-tech item using inexpensive and handy objects. She does all this voluntarily, free of charge and with a smile and congenial chatter to boot. 

Her boards weren't appropriate for C. who, we all agreed, needs music to become even slightly engaged. The Hubby promised to order online these very simple little music-playing devices that can be incorporated into one of her boards. 

At the door, she disclosed to us that one of her adult grandchildren is retarded too and told us all about her. 

Yikes, there it was, that much maligned "R-word".

But it was used utterly innocently with not a whiff of insult or disdain. I'm sure that even the most ardent "Spread the Word to End the Word" activists would have given this woman a pass. She simply belongs to a generation that's unaware of the word's negative connotations.

But I was reminded that my son - my most reliable source of relevant information - alerted me last week to the passage of a bill in our country’s parliamentary committee for legislative matters on the use of the R-word. When enacted - which is apparently a done deal - it will replace it with "intellectually developmentally disabled" in all government material.  

In local parlance, the R-word is a very common insult. So I'm always jolted anew whenever I receive  some official document with that same word in its letterhead. Since we lag behind in so many other realms - most egregious of all the de-institutionalization of people with disabilities - I presumed that this move must be late too. 

Instead, I learned that the US, for instance, only took this plunge in October 2010 when President Obama signed into law Bill S. 2781, “Rosa’s Law”, removing the terms “mental retardation” and “mentally retarded” from federal health, education and labor policy and replacing them with people-first language like “individual with an intellectual disability”, according to Spread The Word To End The Word, an ongoing campaign by Special Olympics, Best Buddies and other supporters to eliminate the use of the “R” word.  To date, most but not all states have eliminated the use of that word from their laws.
John Franklin Stephens

Some will argue, not unreasonably,  hey, it's just a word and don't actions speak a lot louder? For them, here below is an eloquent response from somebody directly targeted by the R-word.
Sometimes I feel like Professor Van Helsing, or maybe Buffy the Vampire Slayer. I keep trying to kill this thing and it just won’t die. Of course, my nemesis is the “r-word,” not a vampire.
Like Dracula, the r-word just sucks the life out of those of us who fall in its path. It spreads like an infection from person to person. It seems as though perfectly nice people who “mean no harm” get bitten by hearing others using the term while “meaning no harm.” And so it goes, from person to person, until it becomes so common that even Presidential Chiefs of Staff, radio talk show hosts, movie characters and famous political pundits use the nasty slur — then say they “meant no harm.”

To all of you who use it, let me say it one more time, THE R-WORD HURTS. You don’t have to aim the word directly at me to hurt me and millions of others like me who live with an intellectual disability. Every time a person uses the r-word, no matter who it is aimed at, it says to those who hear it that it is okay to use it. That’s how a slur becomes more and more common. That’s how people like me get to hear it over and over, even when you think we aren’t listening.

So, why am I hurt when I hear “retard.” Let’s face it, nobody uses the word as a term of praise. At best, it is used as another way of saying “stupid” or “loser.” At worst, it is aimed directly at me as a way to label me as an outcast — a thing, not a person. I am not stupid. I am not a loser. I am not a thing. I am a person.
[Source: "I Am the Person You Hurt When You Say the R-Word", John Franklin Stephens, Special Olympics Global Messenger, in Huffington Post, May 5, 2014]

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.

Thursday, June 9, 2016

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.

Tuesday, May 31, 2016

In the dark and groping

Here we are, C. and I (my hand, that is) both struggling. She, to move her fingers on the board and elicit sounds. I to prod her to do that. At times we both succeed. Ever so slightly.

In the world of profound disability, the minutest desired movement is welcome. But sometimes even that eludes us, as you see here.

In this domain, I'm really just groping in the dark.  I rely on whatever meager Occupational Therapy skills I've gleaned from professionals over the past twenty years. It can be an exercise in frustration and futility.



The OT's at C.'s school are in the same predicament. They may very well succeed with the less severely impaired children. But when confronted with C. and those like her, they are rather clueless. In the fifteen years she's attended that school, they've achieved nothing with her.

I know that there are OT's out there whose expertise lies in working with profound disabilities. The Hubby and I once hired a pair of them for an hour at great expense. C.'s school lacks the funds to employ them and we couldn't afford to bring them back to our home.

But our government clearly can. If it re-channeled just a fraction of the multi-million dollar budget it lavishes annually on large, closed institutions, to children with disabilities who live at home, this problem would vanish.

And C. might actually press the buttons on her toy board. It's that simple.