General health issues, wheelchairs and a letter

        


     

      NOVEMBER UPDATE: Mary’s general health is quite good, despite the fact she occasionally needs to visit her GP for various small complaints.

       But she’s been suffering from a common ailment for the past month and really needs an ultrasound test – sooner rather than later. Easier said than done.

       This week, over the course of a morning, we tried to make appointments for the test at three different clinics.  Not one person arranging the appointments on the other end of the phone seemed to understand the words “severe brain injury” or “problems swallowing.” They were insistent that Mary would absolutely have to down five large glasses of water for the test.

      “We might get one thickened glass of water into her,” we told them. “It takes her a long, long time to get any fluids down.”

      Not good enough, despite the fact she has had ultrasounds for the same problem without having to drink vast amounts of fluid.

      So this is what happens when a disabled person – with two aggressive, insistent and vocal guardians – must contend with when they are in a community setting.  It’s as though no one listens. And no amount of repeating or explaining makes a difference.

       Mary will get her ultrasound – later rather than sooner – at a clinic we’ve used before, one that understands her condition. But so much for urgency.

       Still, we managed to not rush to an ER in a panic, but kept a close eye on the condition and monitored it twice a day.  So far, so good, in this case.

        But what happens to those in the community without rabble-rousing parents who can shout if necessary? I shudder to think.

         Mary, we were told by one health care official this week, fell through all the cracks in the system along the way. And this is while we were there, all the time, advocating, pushing, being mouthy, complaining, writing letters, questioning and being obnoxious.

         How many disabled people are there out there struggling without advocates? If Mary fell through the cracks, who’s out there dangling and needing care and not getting it? What do they do? Who do they call? There are only so many agencies – all of them pressed to the wall – that can handle tough cases. Who waits the longest for attention? And how long is their wait?

         It’s a nightmare.

       Mary has two wheelchairs – one ordered for her needs while she was in the hospital, and a new one that is more adapted to her present needs. Both are precarious. They cost almost $12,000 in total (the Ont. government pays almost 75% of this cost for those who need chairs). But you’d think they’d been put together in a discount store. Tires go flat, arms flip off, footrests fall apart, pins and screws clatter to the floor. Other than the private therapists, Mary gets the most visits from medical equipment repairmen.

       And she’s not freewheeling it down the street, either. She spends most of her time sitting in her own apartment. We’d probably have to hire a repairman full-time if she were to suddenly take wing and want to go places.

An interesting note: About a month ago, I,  on behalf of myself and Paul,  wrote an 8-page letter to the two dozen or so board members and CEO of the hospital where Mary sustained her brain injury. We waited a long time to do this. I wanted all the expert witness reports, the report from the College of Physicians and Surgeons. I wanted to have all the facts and opinions before me.

        Interestingly, the experts and college all said the same thing: The young resident on duty that night did not do enough to ensure Mary’s care. He followed protocol, but he could and should have done more to get her into an ICU.

       The letter wasn’t accusatory, and it wasn’t too, too terribly critical. It did point out the fallout that occurred from that night of misjudgment and failure, how it affected Mary and each and every member of her family,  how it is still affecting Mary’s quality of life.

         Mostly, the letter beseeched the hospital to never allow this to happen to another patient or their family (let alone a pregnant and post-operative patient) and to ensure that safety measures have been put in place since that dreadful night.  I pointed out that we’d seen some mighty dodgy things in our three and a half years at the hospital and that we had, on occasion, been on hand to help divert pending disaster with other patients.

        We didn’t expect an answer. Didn’t, in fact, even want one. It was something that needed to be said, was said, delivered and done with. If I never heard another word from a single member of staff at that hospital it wouldn’t have bothered me. I could easily have gone to my grave with it all put behind me once that letter was delivered.

        But we got an answer from the CEO – and an apology:

        The CEO apologized on behalf of the hospital and “personally for what happened to Mary and your family. I have read and reread your letter and I have heard you.”

       I was assured he had taken all our concerns “very seriously.” 

       The CEO also would like to meet with us personally to share “those changes we have made.”

       One problem: It's still raw, even after five and a half years. We're battle-weary. And do we really want to meet after all we’ve gone through?         

       Shouldn’t we just be happy knowing changes have been made to ensure the safety of other patients?

      And how would I ever get through the door of the place to meet with these people without collapsing on the threshold with an anxiety attack? 

      Do we have to do this? Should we do this?

      Well, maybe. 

     

    

       

Battle with food continues to bewitch and bewilder

      

                                                                                Thanksgiving, 2014

         We’ve been terribly close to giving up entirely on Mary the last few weeks. The trekking, the worry, the appointments, the constant needs, the therapies that go well one day and disastrously the next take a tremendous toll on her, but it’s overwhelmingly exhausting for her parents, too.

         It’s enough to do in your body and soul. And we’re not young anymore.

         But Mary keeps plugging along, sometimes showing great improvement, at other times appearing to slide dangerously backward. There’s no upward continuum with a severely brain injured individual. The downs are greater than the ups and the disappointments frequently outweigh the victories. What is crucial is that there is an incremental change upward overall, and we see this even on the bad days.

          It’s challenging for all of us.  It’s just the way it is. It’s hard to accept and hard to live with this awful, unsolvable fact; there is no cure, no pill, no operation to alleviate any of  Mary’s problems. Nothing will possibly change a brain injury. They’re an enduring and unconquerable foe, elusive, unseen, unpredictable and downright sneaky.

         A sad aside that points out that even doctors aren’t immune to insensitivity regarding neurologically and brain-damaged individuals: I was at an appointment this week and while I was dealt with in a professional manner, I found this doctor chivvying along a man who clearly had suffered some brain-oriented disaster; “Come on, Mr. xxxxx, we haven’t got all day,” as the poor old soul shuffled along moaning and trying to keep up with this impatient medical man. I was horrified. Then I thought, well, what do you expect in this day of cutbacks, no time, too much pressure on a stretched service?

          Respect. I expect to see respect for the most damaged, confused, hurt and bewildered patients who often don’t have a clue as to where they are or why they’re there.

          It broke my heart, and I will never again look at this doctor in the same way.

          Mary’s trials with food continue to bewitch and bewilder us. Some days she’s fine; other days she struggles to eat and swallow.  She’s maintaining her weight – she’s tall and slender – but the entire process of keeping on the pounds is a tiring one. She may have to be fed more supplemental fluids – similar to Ensure – because it packs more of a nutritional punch and is a product that is frequently used to feed those with gastric tubes (or peg tubes).

           Food isn't always her friend: She nearly choked to death twice at the family Thanksgiving dinner. She was excited to be there. She always loved family gatherings, seeing aunts, uncles and cousins. She wanted a glass of wine, she wanted turkey, she wanted the stuffing, the green beans (a no-no), she wanted it all. And even though she got most of it, mushed up and cut into tiny, minute pieces – it was too much for her.

         She wanted to be normal, to show us she could do it.

         Ambition can be a dangerous thing.  It wasn’t the first time Paul has stuck his fingers down her throat to dislodge whatever was causing the problem. As you watch, you feel your entire body tingle and numb with fear. You wonder, is this it?

         Mary can – and does – choke on the littlest thing. Some days she grabs her coffee thermos and downs her favourite drink without a hitch. Other times…. Exhaustion rears its head and weakens every fibre of her being. At those times, feeding can take an hour and a half, despite the fact her fluids are thickened, her food is mush. A lot depends on what’s going on around her. This time it was a combination of fatigue and excitement.

         We all miss our mouths at times when we’re tired, spill coffee down our white shirts, drip and swallow the wrong way if distracted. But those missteps can be critical for a brain-damaged person with muscle impairment.

          It sounds horrifying, but we’re so accustomed to the hazards of Mary and food and drink that we simply react while others would panic. Panic is not an option.      

          This week during physio, Mary cycled three kilometres on a stationary bike without stopping to even think about it. She stood when asked, slid down the wall, took ‘good’ steps and showed great promise. This doesn’t happen every time. But it happens enough that we hope Mary can take part in a more intense process of rehab down the road.

         She may never be without the need for 24/7 care. And nothing will likely change that short-term memory, a 10- to 15-minute window of knowing what’s going on and being aware of the people around her.  She will never cook another meal, she will likely never be able to bathe herself. We know she will never do her own laundry, make her bed, do her dishes or have enough memory to accomplish the things we take for granted. This will never be and we can accept that. (Well, we can’t. But we have to.)

         But we do have a few goals in mind for her, which, we believe, she can attain.  We hope, because she is so physically strong, that she will one day have enough balance to walk on a smaller walker and shuffle about – albeit precariously. This would be a huge improvement. This could prompt more changes in her.

        And, because the hyperbaric oxygen chamber therapy improved her eyesight, we hope she will be able to read more, watch more TV, know what’s going on in the wider world.

        Our hopes and dreams for Mary are hampered by the intricate and extensive damage done by a lack of oxygen April 8, 2009. All of Mary’s life and dreams stopped that night. But ours didn’t. So even though we’re tired a lot of days and fed up most of the time we’ll try to keep some dreams alive for Mary – and more importantly, her daughter.

       

Update on hyperbaric oxygen therapy

   

                                                        Mary works this week with her physiotherapists

   No real surprise: There has been no miracle for Mary with the hyperbaric oxygen chamber therapy. But there has been a slow and creeping improvement in muscle tone, awareness and, most specifically, with Mary’s eyesight. As of today, she has undergone 30 ninety-minute sessions and has 10 treatments left in this cycle.

     We can’t, and won’t, rely on our judgment – so anxious are we to find any kind of improvement – but we’ve quizzed the people who work with her every day, her caregivers and the private physiotherapists who come in to treat her. Each and every one of them has conceded there are subtle differences in her eyesight and co-ordination. And we trust them. They’ve known Mary a long time.

      Her short-term memory is still shaky and probably always will be. (Not unless a miracle happens.) But we keep going with the therapies in an attempt to improve her quality of life. The hyperbaric chamber oxygen was a long shot. We just had to give it a try. Even small changes make a big difference to someone with a severe brain injury.

      The two physios who work with her weekly find she can now more easily slide up and down the gym wall, from a sitting to standing position and back again. Her stationary bike cycling has improved and to date her longest trip has been three kilometres.

      We use a variety of tools to help her memory. Mary spends a lot of her day in her wheelchair. She watches TV, listens to music, and with the aid of her caregivers, plays cognitive games on her large touch-screen computer. She sits facing two huge whiteboards: The left one contains comments on the previous day, who visited her, where she went, what she did. The right one contains the date, month, weather, who her caregiver is that day, her washroom schedule, where she’s going, what she will be doing that particular day.

      Everyone has noticed she now seems better able to read the two boards.  She sits with her head up more, listening intently and reaching for her communication sheet, instead of fading out.

      It all sounds so small, so simple. But training a severely injured brain to do even these simple things is monumental. And we’ll take even slightest, smallest change. It gives us something to build on.

      While there has been a lot of research done on TBI – traumatic brain injury – not a lot has been undertaken on ABI - anoxic brain injury. We’re kind of groping in the dark. We have no role model to follow. There are no guideposts at the side of the road. We’ve been hanging out at various health care facilities and clinics for five and half years now and while we’ve met dozens of people with traumatic brain injury, we’ve yet to meet another person with severe anoxic brain injury. We don’t really know what improvement looks like. We have no idea how, or even if, Mary can improve. 

       Pick up any book on brain injury and you’ll find few pages on anoxic brain injury cases. We believe this is because many people don’t survive these injures, are taken off life support long before anyone can tell what the outcome might have been.     

      Mary only survived because she was 24 weeks pregnant and the only goal was to keep her alive long enough for Isabella to be delivered. The fact she came out of her deep coma surprised us all.

        So, where do we go from here? We keep going, believing – perhaps foolishly, only time will tell – that we’ll bump into something at some point that will help her. But as long as she continues to improve, even slightly, the game isn’t over.

        

     

     

      

  

Hope leads us to new therapy

     Mary is spending a lot of time these days in a hyperbaric oxygen chamber, ninety minutes per session. Will it help her? One doctor rolled his eyes and shrugged, another said it sure wouldn’t hurt to try.

      This kind of therapy is best used, research indicates, soon after the brain injury, especially an anoxic brain injury. Outcomes vary. While it may aid some injuries – like those people who have cerebral palsy – the outcome of giving the therapy five years after the initial injury is questionable.

      We’ve done some research (scant as it is) and learned that even years after the initial brain injury, vigorous therapies (OT, PT and cognitive), as well as hyperbaric oxygen chamber therapy, may indeed nudge things along.

      So we signed Mary up for 40 treatments. She’s had ten sessions so far, and I can’t tell you how closely we scrutinize her behavior after she’s emerged from her chamber, having endured high levels of oxygen. We really shouldn’t jump to judgment, but who wouldn’t in our situation?

       Have we noticed anything yet? Not really. But the effect is cumulative and it may take a few more weeks to see any changes. She does laugh more readily while we drive her to and from these therapies at a private clinic, but we put that down to our wit and scintillating company. She thought we were pretty weird parents even before this happened.

       And she did try to answer Paul’s Blackberry the other day when he stopped to get gas. He reached into the car and found her looking at it and trying to push the right buttons to answer it. She hasn’t done that before.

      But maybe she was just having a really good day.

      Oh yes – and she has answered our questions a number of times by distinctly saying the right words, clearly, without reaching for her communication board.

      But who knows?

      We have a neighbour – a youngish woman– who suffered a massive brain bleed a few years ago while she was working out. Yes, she was an athlete and in great shape. Now she sit s in a wheelchair, has no balance and was, one day last week, in the chamber opposite Mary.

      Her husband says the therapy has really helped her. So we take some comfort from that. They’re nice people. They didn’t deserve any of this.

      But who does? During this long journey, we have met some very wonderful families, all as baffled, alone and confused as we are, all of them struggling to regain normalcy, mobility, quality of life for their family member. And they are, as we are, paying thousands of dollars for these uncovered therapies, relying on fundraisers and kindness of others to keep things going. Treatment outside of the hospital and OHIP-funded rehab means you’re out of pocket if you want  ­– or need – more than the system says you can have. That’s just the way it is.

      It has been an eye-opener. But it has also been a relief to meet others who are in our situation, watching a daughter, son, wife, husband or child struggle to regain their lives. Some can’t. Some never will. But there’s this circle of hope that keeps us all going.

      There is a Facebook group called Brain Injury Awareness, which I joined a while ago.  If I think I’m having a rotten day, if Paul is worn out and Mary is wailing with frustration, I turn to this site and read the words of those whose family members are suffering similar – or worse – situations. The postings are often made by brain-injured individuals who are at some point on their long road to recovery. I never shut down my computer without feeling a bond with those people I’ve never met. I marvel at their courage, their suffering and their loneliness. Because brain injuries steal the person you love, or the person you are. And very few people you knew prior to the injury want to know what you’ve become, or how much your family may be struggling.

       So you take your solace where you can find it. And you join that circle of hope and keep going, because Mary has no plans to give up any time soon. She just keeps on, pushing her damaged brain, doing everything you ask her to do, trying anything you offer her, struggling and struggling to keep on going.  She gets tired, sure. She gets cranky and irritable, but she’s there. She’s in there. She sees, she hears, she understands.

       And she laughs. I was ranting about something in the back seat the other day. (I do that when I’m exhausted.) Mary sits up front with her dad when we take her to therapies and likes to fiddle with the buttons on the dash. (Before her brain injury, Mary loved nothing more than to jump in her car and drive, anywhere, with anyone, as long as it was an adventure.)

      At some point during my rant, I realized her shoulders were shaking and she was looking at her dad. They were laughing at me like they used to ­– the inside family joke and rolled eyes. “There she goes again.”

      I couldn’t have been happier. It makes it worth carrying on – and ranting – if that’s what it takes.