'What if'

                                          Mary works with two of her physiotherapists
                                                                earlier this week.

      Mary realizes something is very, very wrong. She just can’t quite put a finger on it. She insists she doesn’t live in her small apartment, that she’s just visiting; she often thinks she still has to go to work.  She knows her life has slid off-kilter, she just can’t grasp how or why.

     On Tuesday, April 8, five years to the day since her life changed dramatically, I wrote on one of two huge whiteboards, used to update Mary’s life: ‘ Five years ago today Mary suffered an anoxic brain injury’. We wheeled her closer to the board and let her read it. She was horrified – again - because we’ve told her over and over what has happened to her. And each time she forgets.

    Perhaps that’s a good thing.  But this forgetfulness isn’t a friend. It’s what is keeping her from moving forward and getting better. It means she has to work harder.

      The two whiteboards, each marked ‘Yesterday’ and ‘Today’ help keep her life in order. PSWs and family members mark down their visits and what has occurred during the day. It’s like a giant diary:  Physio, 5.30; next washroom break, 5; Isabella visited yesterday, and so on.   

     Part of being caught up in a situation such as ours, trying to obtain an adequate quality of life for Mary, trying to find and keep up the private therapies, is playing the ‘what if’ game. I think we do it every day. What if we got her more speech therapy? What if we put her into more social programs?

      What if … we had just stayed overnight with her; what if the nurse had found her three minutes earlier; what if the original hospital staff at the first institution to diagnose her had acted more quickly?

      What if.

      We have indulged in ‘what ifs’ so many times we’ve lost count. What ifs are useless; they are longing for hindsight, dwelling in the past, an inability to move on. But still … what if.

      A lot of our ‘what ifs’ are founded: Mary has been decidedly unwell for a month.  She is not as alert, not as bright, doesn’t engage as much as she has in the past.  What if the shunt is acting up? What if there is an infection brewing somewhere? What’s wrong? We don’t know. So a visit to a doctor and a load of blood tests reveal she’s just fine – all things considered. But a review of her long list of meds ends up with, “what if we take her off this medication? Let’s see how she does, because she’s on a really high dose. “

      That dose had been increased several months ago in hopes it would improve her awareness. We were warned it could cause other problems and side effects – none of which we witnessed. But something changed.

     What if ...

     The medication, Amantadine, is one used to help treat Parkinson’s disease. It is a neuro-stimulant and anti-viral drug also commonly used for patients with brain injuries. The drug was stopped immediately more than a week ago and we watched for days to see what would happen. At first it seemed like the drug might have been causing the drowsiness, the lack of alertness, the lack of response. But then she got much worse. By day seven we were on the phone begging for her to be put back on half the dose she was on. Her arms were flailing and she was unable to communicate. True, she had a cold, but still … what if she didn’t have the cold? Would it make a difference?

     Brain injuries are tricky. What does and doesn’t further affect behaviour and awareness is hard to pin down. But we do know she does need this drug - as well as the anti-spasmodic medication, Baclofen, which she takes daily. Doses are determined by trial and error and we have the Baclofen dose down perfect. The increased Amantadine – done in the hope of making things better – was an error. So was taking her off it completely.

      There was a period of three weeks one summer when Mary, still in hospital, was accidentally taken off the Baclofen; the prescription ran out while the nurse practitioner was on holiday and not one nurse on the floor noticed the drug was missing from Mary’s meds or that Mary was slowly deteriorating. We watched in horror as she became a completely different person, her arms uncontrolled, her body in spasms. 

     Now, what if Mary had been a cardiac patient and crucial meds to keep her alive  had been missed? What if we hadn’t been around daily to watch and notice the dramatic changes?

     The nurse practitioner was quite angry when he returned and we told him the story. I think a few people were reprimanded over the missing medication.

     The recent spate of stories detailing how some hospitals are slowly beginning to encourage foreign visitors to come to Toronto for paid operations and health care has got us indulging in more ‘what ifs’.       We’re sure this wasn’t happening five years ago and we realize we’re indulging in a fantasy ‘what if’. But what if this happened to someone else’s child?

    What if the practice of taking patients for profit was in practice at the time? What if our daughter was left alone and unattended and not given the proper intensive care treatment because a privately paying patient had come to the hospital, put up thousands of dollars to undergo a risky operation they couldn’t get at home and was taking up the last bed in the neuro ICU while my daughter was struggling to survive?

     While they were getting the best treatment in the world, nurses watching their every breath, my daughter was – as they found her – 24 weeks pregnant, on her side and what they call “cyanotic” – a deep purple, gurgling and gasping.

    ‘What if’ that patient got so much better, thanks to attentive care, because they were, after all, very rich and able to plunk a hundred or so thousand down for their treatment – all the while enjoying the best of care because of that money. God forbid a paying patient not be given the best. They need to survive and get better to go home and pass the word.

      What if.

     When Mary suffered an anoxic brain injury five years ago it appeared to us that there just weren’t enough nurses on the night shift to monitor all the patients in their care; the ICUs were full and they just couldn’t find a bed in an intermediate room where a PSW sat and watched four patients. And that was then.

       Months and months of being aware of staff shortages now make us wonder: Do these private patients also hire private nurses to look after them post-op? If they couldn’t look after an extremely ill pregnant patient five years ago, what are the chances that a woman in a similar situation would get the care they deserve now?  Are patients now in jeopardy sometimes because already stretched resources are going to the paying patient? I hope not.

     What if.

      It gives you pause. And then it makes you pause again. And then it scares you half to death.

     If we are going to have socialized medicine, then there must be a fair playing field.  It’s not as if someone ‘will’ get hurt, people already have been – in crowded ERs, through mistakes made by too-busy doctors and surgeons. We have heard stories that would make you weep. We saw patients calling for help when nurses didn’t answer bells, vulnerable post-op people wobbling along halls, and confused patients in nothing more than a gown walking past security guards and out into the street.

    I despair for all of us – and for our daughter. What if her ventricular peritoneal shunt blocks again? The damned things are unpredictable. Will she wait in pain in a hallway while someone from halfway around the world gets theirs fixed first because they came cash in hand?

      Is it time we all turned to private care? It feels that way. It’s one hell of a slippery slope.

     We have already handed over thousands and thousands of dollars to therapists who are working to help Mary talk and walk again.  OHIP doesn’t cover a lot of these things. It does if you are well enough to sustain the rigours of rehab facilities, but not everyone is strong. Some patients need more time, more intense work. After the failure of three rehab stints at one facility (due to infections), every single rehab hospital turned her down. She was denied the chance to get better on her terms, in her own time, as she got stronger.

     And yes. Someone is making those decisions. Some people are worthy of saving; others are not. Brain injury isn’t a cookie cutter thing. It doesn’t follow a pattern. It isn’t predictable and every brain-injured patient is different. But the system doesn’t see it that way.

    If our road has been this rough and rocky under a system that is supposedly well-run and funded – what if it stops considering us all equal? What if you can’t get the care you need when you need it?

    What if.