Wednesday, September 17, 2014

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.
        
     
     






      
  


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