Lots of questions, no answers

        

                         Bob and Mary, summer 2008  

      If there was something that could go wrong, it would. And I can say that with the greatest accuracy because Paul kept detailed diaries for every single day Mary was in that hospital. 

     Reading them brings back such vivid details ...  “Mary easily agitated … her prolonged coughing making her voice unbearable … long siege talking its toll.”

     And on and on, scrawled on page after page in handwriting that absolutely no one can make out.
     And that was just the beginning. Every single day since April 8, 2009, has taken an irreparable toll on each of our lives, not to mention the sweeping and horrific disability Mary now suffers.
      Anoxic brain injury. It was just a term I’d heard up to then.         Each one of us – despite the arrival of Isabella – dreaded having to go into that hospital daily and face a Mary we just didn’t know. Worse, we didn’t know how to help her, couldn’t make it better, as parents like to do, and didn’t understand what was happening to her or if she’d get better.
     And none of the health practitioners we dealt with seemed to be any better informed. Brain injuries are just plain unpredictable and no one really knows the outcome. That said, having spent three and a half years visiting that floor, I know that anyone who comes in with a brain injury will never be quite the same. That certainly could be accurately carved in stone.
     It was July and we were unable to imagine what it was like being Mary. Her frustration mounted as she became more aware of life around her and she’d fight us. She hated the trach, she hated the tubes, she hated being tied to the bed.  After the initial crisis and flurry of fear, many of her friends stopped coming to see her, her co-workers fled back to their busy lives and she was left with us; just us and our extended family who continued to trek downtown to offer their support. But we were faithful beyond measure – at least I like to think so. We monitored every move made to treat Mary, every single thing she did or any drug she was given.
    If she was going to get better, we wanted to know how to make it better, what we needed to do to make it so. We’d have hung from our heels outside a hospital window if it had helped.

    Despite Mary being assigned a wonderful nurse practitioner who kept us informed, suggested treatments, helped us to understand what was going on, there were lots of psychological problems for us once Mary was back on the floor where it all happened. The same nurses were there who were on duty the night she nearly died – many of whom were responders to her Code Blue call at 12.01 a.m., April 9 – and the room where she struggled to survive was just steps from the nurses’ station. I couldn’t walk past it for more than a year without my knees going weak.

                               Mary and Isabella

     Mary seemed weak for a long time after coming out of ICU. It might have been the brain injury, the pregnancy – we don’t know. But she just seemed exhausted. Initially, she struggled valiantly to come back, showing signs that – well, she might not be perfect – but she just might get to some level of her original Mary-ness.
 
     By July, a cough straight from hell had set in and Mary needed frequent suctioning and antibiotics and her trach caused untold problems (it was corked and uncorked many, many times). And we noticed she couldn’t see very well. But that seemed the least of our worries.
    Still, they got her up out of the bed and sitting in the trauma chair, which must have been novel for her after lying flat for three months. She was plagued with agitation, a most common affliction among those with brain injuries, however, and the battle to tie her arms down continued. She kept checking her non-existent watch, insisting – when she managed to get out a few words – that she had to go to work. Various therapists would come by and say, “See you tomorrow, Mary,” and she would faithfully respond, “No. I’ll be at work.”
      By July 19, we were becoming frantic. Mary seemed to be losing her ability to talk to us. We asked time again for the trach to be removed; she still had a feed tube taped to her nose and noises were being made to have a gastric tube put in her stomach. We asked and asked what was going on, why had Mary lost the ability to speak, but no one seemed to be able to tell us much.

     I found a note Paul had written around Day 124 and tucked into the diary:

    ‘During her latter days in the ICU, and when she was first corked (trach) on the floor, Mary was bright, articulate and able to talk to us fairly easily.
     The past few weeks, however, have alarmed us because Mary began regressing in this area … she can hardly talk and when she does she mumbles and doesn’t move her jaw … we can’t understand her.
   Since last week she has taken to drooling and sticking out her tongue quite a bit… This is totally new behavior for Mary and it is very distressing.
     We asked for a meeting last week and only one person came … '
 
     And then, one day, as we stood by her bed, something decidedly odd and unexpected happened. She zoned out completely for two hours and we went into a full-scale panic. Paul ran for a nurse. Why was this happening? They took a look at her and wondered if she’d had a seizure or stroke and arranged for a CT to be done. Six hours later, we got word that it was negative. Not only had she not had a stroke, the VP shunt was fine and the ventricles were still the size they should be. We were confounded. I think they were, too. We still don’t know what happened that day.
   When the trach was finally removed at the end of July, Mary lost all ability to speak to us. They scoped her throat, did numerous blood tests and sent the speech pathologist around.  She suggested the speech problem may be connected to the orders given by Mary’s brain. It was injured, after all.
     But how, we persisted, if she could speak to us up to now through the trach,  had she suddenly lost that ability?
      They just couldn’t give us an answer. And as frustrating as that was at the time, we’ve come to learn there’s a whole lot of stuff doctors, nurses and therapists just don’t know about how the brain works – especially if it’s a damaged brain.

      The note Paul wrote – it would be the first of very many, unfortunately – also begged for information on the amount of brain damage Mary had sustained. It’s a pleading note – not one a parent should have to write to hospital officials where your child has been a patient for 124 days.

     ‘We still do not know what areas of Mary’s brain were damaged; requests for this information have always been met with, “sure, no problem,” but we never see it. Can we please get a printout or a synopsis of this so we know what to look for in Mary.
     We also have no idea what the prognosis is for our daughter – to some extent this is a guessing game, but surely someone has an idea and can talk to us about it.’
 
 
       You almost get to the point where you stop asking. We never did get a prognosis: Not one word in the three years and four months Mary was in that hospital.
             
     So we did what we could: We took it a day at a time. But despite a concentrated effort to work hard on Mary’s behalf – Paul and I became her official guardians as Bob was grappling with his new fatherhood – we were indecisive, upset and frustrated. The days dragged on and on. There were a few ups, but many more downs as we waited to see what would happen for Mary.
    There was a plan: Rehab. But it wouldn’t be so simple.
    You break a hip, you go to rehab. You have a stroke, you go to rehab. You suffer a brain injury, you go to rehab. There are several rehab facilities around Toronto – and we’ve visited a few – but it was one particular rehab where the floor case manager was trying to place Mary. This is no easy task, we were told. Various reports on Mary’s condition were sent to them and we waited.  
       Finally, the rehab co-ordinator called to arrange a meeting and Paul and I and Bob attended on a grim, rainy end-of-summer afternoon. The place was dreadful, grey, dull and institutional. I wondered how anyone could possibly get better there. The rooms were dark and dreary, the lighting poor and it seemed more like a prison than a place of improvement and healing.
       The rehab official did not want Mary there as a patient. He made that abundantly clear to us and was quite hostile. His assistant, another unfriendly and officious individual, made it seem like they were doing us a huge favour by agreeing to take Mary. Was this just a side effect of socialized medicine, we wondered? Pick and choose? Best bunny gets the prize? You win 12 whole weeks with some of the most uncaring individuals you’ll ever meet?  But that’s only if you can get around and do for yourself because some of the staff don’t like changing diapers and especially don’t like having to feed patients. God forbid.
    We were not only horrified, we were downright depressed. If we’d had deep pockets, which we don’t being retired journalists, we’d have packed her up and sent her to the U.S. They have some amazing programs there, but the costs are breathtaking.
 
     So there we were, forced to sit and listen to an unctuous individual tell us Mary wasn’t really worth rehabilitating – even as baby Isabella sat on my lap gazing at him with her killer blue eyes.
     They’d take her, we were told, but it seemed to us there was some political boil-in-a-bag dish being served. It was for no one’s convenience; it was just not good.  It would be a waste of their time and it was a taste of what was to come.
      That was one of the lowest points of this whole ordeal. Here was a health official who was supposed to be intent on making people better, helping them regain their lives. We were appalled by his attitude.  
          And that thinking, that negativity, must have trickled down to the worker bees, because Mary had one hell of a time at this facility. If there was any one thing that made her worse, weakened her and altered her brain irreparably, it was this rehab centre.

       Everyone, it seemed, except for one truly outstanding nurse, thought we should just stick her in a nursing home and forget it all. Truly, that was the message conveyed to us.
    (My lasting impression of that place? A bunch of nurses who always seemed to be sitting around a dining table with pop music blaring. Or they were at the computer. And one of them, who happened one day to be looking up something decidedly un-medical, told me when I went to ask a question, that Mary had urinary tract infections because she wasn’t able to look after herself. Really. I think that’s why she was there. Really? I often wonder if this individual still has their job. But then again, I don’t think I want to know.)
   We quickly concluded and learned that they only want patients who can get there on their own steam, carry their own bags and feed themselves.
     Rehab? One of the cruellest places I’ve ever seen – and that’s quite a bit in my 60 years.
    

Next week: What rehab can’t do