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.

     

      

Dragging Mary back from the depths

      

                                                          Isabella and Mary

         Just when you think it’s all in vain and that nothing is moving forward for Mary, it gets a little better still: Mary continues to be more aware, interested in things around her and keen to do better. Her memory is still patchy, but there are times when she can and does remember for longer periods of time. She is – as many of us are ­– affected by the weather and she definitely doesn’t do as well when the humidity rises. She fidgets and her eyes droop as though she is about to nod off in her wheelchair.

       We used to think Mary had become resigned to her situation, sitting endlessly in her wheelchair, being fed, seeing the same four walls, taking life as it came to her. But we’re not so sure now.

        There is, deep inside Mary, the knowledge that life is going on around her – and without her. She cries often when you go to leave. She cries when you give her news of friends – news you’ve already given her, news she has already cried about.

      This past week, we reminded her that one of her friends, a young woman she’s known since Grade 2, is getting married in London, England, and that some of her friends would soon be on their way to attend the event. (Johanna was one of Mary’s bridesmaids.) Mary burst into tears and pointed to herself. She cried and said she didn’t know, even though a few weeks ago, she sat down with her communication board and tapped out a message for Johanna and Thomas to be read at the reception.

      She cried because the event is happening and she can’t be there. 

     Mary frequently cries … because there are so many things going on out there; cousins planning weddings, taking trips, friends having children, visiting faraway places (something Mary loved to do) – and she realizes she can’t be a part of any of it.

      It hurts her to realize she is isolated. And it hurts us to see her that way; because Mary loved a good wedding, a great party, an adventure, a trip, to be with people.  She laughed easily, had a wicked sense of humour and realized there were two sides to everything in life.

     Now we think she knows she’s living the downside and is helpless to change it.

          

      We’ve come to believe she dislikes her wheelchair, her bit of freedom, because no matter how many times it is adjusted, rearranged or tuned up, she ends up slumped over in a posture that looks like despair. By the end of the day, she’s sagging in it, a look of defeat on her face. There are days when she just cries at the least little thing and that’s hard to watch.

     It’s hard for us not to despair, too.

     We try to get her out of her little box in the sky as often as we can. She loves sitting in the passenger seat going somewhere – anywhere, as long as she’s moving. Last week, after a dental appointment, we got her a coffee and took her to watch the swans at Bluffer’s Park. 

      Despite her dreadful eyesight, she does her best to see what she can. And her reaction to life outside her little sky-box indicates to us there’s a lot more going on in Mary’s brain that we can tap into – if only we can find the right things to do, a program to help, the right people who know how to drag out our essential Mary.

    After her outing in the park, she did something she rarely does – she raised her arms for a hug and croaked, “I love you, Mom.”

    For me, it was an injection of sheer, high-powered fuel. It takes you to a new level and makes you keep on – which is what Mary seems to do best. Keep on.

      

      We know there’s more work to be done because the physios who work with her twice a week say she’s doing extremely well. Their reports from the past few weeks indicate she is walking much better than she used to – and mostly without the ankle braces used to help keep her feet straight.

      We’ve found that when we do offer Mary the chance to get out of her wheelchair and walk the hallway or around the block, she does so with a certain amount of glee. She tries so damned hard that it hurts to watch. Put her on a stationary bike and she’ll peddle for a couple of miles non-stop. After a good session on her feet or in the gym, we’ve noticed her comprehension of things around her, her innate understanding of how things are done, and should be done, has increased.

    So what they say is true – exercise is good for the brain.

      And yet, the damaged brain is a strange thing; you think something is missing, has vanished completely. But, chances are it has not. We’ve discovered that aspects of the whole that was Mary, which we thought had vanished, are just hiding. The traces of the person who was there prior to the injury peeks out at you now and then, reigniting that flare of hope.

    We are, we’ve concluded, involved in the most complex, lengthy and convoluted game of hide and seek you can imagine.

   

                                                             Visit to the dentist

      We’re still waiting to hear about the tooth problem that developed two months ago. Mary needs a filling – possibly two or more – in a rear molar. Her condition frightens most health care specialists – and the dentist is no exception. She could choke during the procedure and that’s risk enough for anyone to refer her to a specialist. But two months in, after seeing a specialist who referred her to a hospital, we’re still waiting word. I don’t think it will come.

      This past week, she returned to the dentist. We’ve noticed for some time that something seems amiss with her front teeth. We just couldn’t put or finger on it. Then we took her to the neurologist for her Botox session and mentioned it in passing.

     “She’s grinding her teeth,” he told us. “She needs a guard.”

      We managed to get that dealt with immediately and the guard should be here next week. It’s a real worry because if she keeps it up she’ll be gumming her gruel – and we don’t want that.  To help stave off the advancing decay, we’ve stepped up her oral hygiene and the dentist treated the caries in her mouth with zinc oxide-eugenol (ZOE), gently removing some of the worst of it. He hopes this treatment will last six to 12 months.

    Our concern now is that the super conscientious CCAC nurse who comes to visit twice a week, who monitors every drug and every change to Mary’s her regime, is okay with this small, snug guard, the safest device the dentist could recommend for Mary.

        Time will tell.      

        And we have a back-up plan on the tooth decay: If at some point the tooth reaches a critical point, Mary will be sent to yet another specialist dentist who will pull the tooth. That doesn’t upset us as we doubt Mary will ever sit down to a steak dinner in the future. She seems destined to dine on pureed and soft food forever.

     But it’s better than a full anesthetic and intubation. Who needs that?

     Small things = even slower solutions. It’s just the way it is with the disabled. Really large problems and it’s exactly the same. You have to hammer and hammer to get a result. If you don’t have an advocate, if you can’t vocalize your concerns within the health system: God help you.

    It took us months and years to set up the treatments we now have in place for Mary. But all it takes is one new medical problem to develop and it stretches our emotional resources – and the other kind, too.

     Mary receives Botox every three to four months, in the parotid glands  - a major salivary gland – to help with drooling. It does help. A few weeks ago, she was given small amounts of Botox in several places in her arms to help her control her arm movements. Mary has a mix of spasm and dystonia, but the therapists say they’ve noticed a huge difference since she had the Botox done. So that’s good.

    Still, despite having a top-of-the-line communication program installed on her iPad, she is unable to control her arms well enough to use it. She goes to point out an answer and misses. Then she gets utterly frustrated.

     We’re still waiting to hear about the light box communication device – now only 16 months on the waiting list – and we are feeling a mite desperate to find a better way for Mary to communicate with us. We have laminated alphabet sheets everywhere but it takes a long time for her to say something by pointing out each letter.

      We got her touch-screen desktop computer up and running again in hopes that there is – somewhere out there – a communication program that works on a big screen. There isn’t – and God knows, I’ve looked.

     We’re now waiting to get in touch with an occupational therapist who might be able to help Mary with a special mouse to use that computer – or to help find us a touch screen program that we could purchase for her.

    So we wait. It’s what we do best.  You just get on with it. And wait some more.

     

Waiting can be a pain in the ... tooth

                                                       
                                                                Mary: Brighter and more alert

      We’re playing the waiting game again. It grates on your nerves and has you reaching for the phone two or three times a week to chivvy things along, if that's at all possible. We take turns calling the concerned parties: “I did it yesterday, your turn today.” A grimace, a sigh; it all seems so fruitless, this chasing bureaucracy.

      Except for a spell wearing orthodontic headgear for 20 hours a day when she was 11 years old, Mary has always had exceptional teeth. No cavities, huge bright, white smile. A cleaning twice a year would do it for her and she’d bounce out the dentist’s door and forget about it.

        But she now faces a dilemma. She has cavities.

        Her diet, since she came out of the coma, has been restricted to soft food, which looks dreadful but smells great. If it’s all you can manage, you knock it back without a thought. Who’d believe mushy food and no sweets could wreak such havoc? Those cherished moments of wrangling with a banana or piece of fruit are rare for Mary, but we make sure she does get one thing each day: Coffee. She adores her coffee. Last I heard, plain old coffee doesn’t cause cavities.

        About six weeks ago, Mary had her three-times-a-year oral hygiene check-up, which she patiently endures and is quite able to tolerate. Due to her swallowing difficulties, the only thing the hygienist has to do more often is suction her mouth to keep the detritus from sliding down her throat. Due to weakened muscles, some spasticity and God knows what else – we still can’t find out what  – she has quite a difficult time eating and swallowing. It takes time, and anyone helping her to eat has to have the patience of Job. Complicating the matter; Mary loves to eat, although you’d never know it when we stand her up to her 5’ 8” height. She’s rail thin and is one of those women who can cross their legs while seated and wind them around each other like noodles. (A side story here. This habit has, in the past, caused ankle swelling. Pressure socks are always on hand and the nurse has recommended their use when the first sign of puffiness occurs.)

        Dental hygiene – even when she was in hospital and visited every three months by a hygienist – has always been at the top of Mary’s list. She has great teeth, yet even now, aware that she can drool at times, she’ll hold a handkerchief to her lips to keep people from noticing this unfortunate symptom of her brain injury.

       Mary has her teeth brushed by PSWs who, while gentle, can’t always navigate Mary’s stiff jaw and mouth. She tries to help when possible and it is imperative, at some point down the road, that Mary gain enough hand co-ordination to do things like this for herself.

          And we’re aiming for that – among other things.

         But something has happened: While she got an all-clear five months ago, she received a thumbs-down six weeks ago. This most recent trip uncovered cavities in a back molar and quite a bit of gum irritation and redness. We were told it would be best if the work was done much sooner than later. So our dentist booked her in for the work.

         For us, it would be a simple thing, an hour out of our day, a frozen mouth for a few hours, a lecture to do more flossing, (which she can’t do on her own), instructions to do some vigorous brushing on the molars and to exercise more vigilance. 

         Several days later, and after much consideration (he’s known her since she was 7), the dentist called us and expressed some concern over doing the procedure. There are risks of dealing with someone like Mary, who cannot signal if she is in trouble, who has spasticity problems in her neck and jaw.

         So, a simple filling or two? Not so for Mary: We were told, due to the high risk and swallowing problems, Mary would need a full anesthesia and intubation. In a hospital.

         We were referred first to a specialist dentist who does anesthesia in his high-tech office. He assessed Mary and said he’d want to have more staff on hand to handle her if anything went wrong. “I’d feel happier with that button to push if something happened.”

         He was apologetic and kind. He referred her on an urgent basis to a hospital where a staff dentist works with people like Mary. That was weeks ago.

         The past week has been a game of call and wait as we negotiate between the dentist who referred her to the hospital and our dentist. It’s getting ridiculous.

        My first inclination, since Mary doesn’t eat hard food, would be to simply pull out the damaged tooth and let her get on with it. Who needs the risk of anesthesia for a filling? Not to mention the side effects of the whole procedure.

        But we’ll wait this one out and go with the expert advice. (Hasn’t that always worked well in the past five years? Hell, no.)

   

        The upside of the past few months for Mary has been her brand new wheelchair, a veritable cobalt blue chariot, and increased memory and cognizance. It is as though she has looked around and noticed a world beyond her four walls. She fights to communicate more. She comments on funny things. She reads what she can of her newspaper every day. She’s even walking better in her big walker.

        In an attempt to spur on this spurt of awareness and memory, we decided Mary needed a long, slender table to help her co-ordinate activities and aid her eating and drinking. We ventured into the confusion of an Ikea store and wrestled huge boxes off shelves onto a cart (Tylenol for Arthritis does what it says, by the way), including a rather stylish office chair (which I lusted after briefly) for the PSW to sit at and help with feeding and other activities.

        The whole thing about brain injuries is to get the person back to doing as much as they could before – on their own and with practice and repetition.

        “Let her follow her own instincts,” advised the neuro-physiotherapist a few years ago. “Don’t jump in and do it for her. She can figure it out.” And it’s true. We’ve run with that advice. The phsyio would hold her up and hand her a cane. As they walked, he’d let Mary instinctively move the cane to support her weight as she moved her legs.

         We do have a body memory and it does come back, with encouragement.

          Bob recently found Mary’s thermal coffee mug that she’d carry on the subway to work. When he brought it in, she immediately picked it up and tried to drink out of it. She recognized it and knew right away that it was an old friend. Now we give her coffee in the mug and let her go to it. It aids her co-ordination and muscle control and it’s familiar, part of her past, something she used daily and which brought her some joy. Heaven knows, we can’t find enough of that for her.

          It all seems so simple, does it not? Lifting a mug of coffee? Getting a tooth filled?

          For people like Mary, it’s just not so.

    

    

                                                            Rediscovering her coffee mug.

This blog is updated about once a month now, as developments occur or new treatments are found for Mary.