No one should suffer like this ....

     WARNING: Some pretty graphic pictures in this blog.

            Mary with her grandmother Pat Archer, June, 2010

     This is hardest part of Mary’s story in so many ways.

   

     When I think back to this bit of the tragedy, I think of Claudius in “Hamlet”, because these few words by Shakespeare resonate in a big way for each one of us who endured three days in May, 2010.

            “When sorrows come, they come not single spies

            
But in battalions.”

      And I think it’s the worst part of this whole ordeal, because those battalions not only came, they marched. Once again – it was so unnecessary; it should not, nor need not, have happened. Ever.

     It was negligence, pure and simple; Mary had to endure two craniotomies within 36 hours because a hospital PSW (personal support worker) failed to strap her into a commode chair.

     By May, 2010, Mary had suffered mightily: Not only was our resilient and bumptious girl gone, she had lost three battles at rehab, returning each time from the facility with horrific UTIs (urinary tract infections) brought on by being left to sit in wet diapers.

      Each time she fought bravely to regain her health, but she was never quite the same. Whatever disruption the infections had caused to her brain, it was looking like those disruptions might be permanent.

      So we settled in and fought with what we had: Mary. Damaged. Hurt. Confused. Broken. A mother. A partner. A child, sibling, niece, cousin …. So many things to so many people, yet completely unable to engage in any of these roles.

    Still, she took in all conversations, loved being read to, could get most of the answers to a crossword, would attempt to do whatever you asked of her. She was trying. She obeyed commands, understood anything and everything. Sure, her memory was pure crap, but she was in there, buried deep.

       What next, we all wondered? Where would she go?

     

      The obvious choice was a nursing home – especially if no other rehab centre would take her. Or a complex care facility. And yet she seemed just a little too “good” for that. And there was the fact she needed constant watching. It was a problem. And they all turned her down, anyway.
     Everyone was at a loss, and it was looking like no one wanted to try and help this young woman in any way. We were surrounded by a resounding chorus of “Nos.”

     Yet Mary loved her daily coffee, would window shop when we pushed her around a mall, listened intently to all the hospital staff gossip – eyes wide, we were told –  and who, just occasionally, floored us all by speaking and saying something intelligent, indicating a greater level of awareness  and cognitive ability than we expected.

      Yet the hospital ‘floor powers’ deemed her unsalvageable. Not worth the effort, the time or the money (which, incidentally, isn’t theirs; it’s the taxpayers, after all. Boy, hospital staff forget that little fact.).

      So we were mired in confusion. We were frantic, fearful and with nowhere to turn. We had a giant puzzle with lots of pieces missing and no board on which to place those pieces we did possess.

      Well, we could always count on this hospital to liven things up; Mary’s craniotomies did just that.

      (And before I get into this story, I will say this: Mary had some wonderful, fabulous PSWs in that hospital. Some loved her like a daughter, others treated her like a sister. They were kindness itself, washing her hair, bathing her, buying her little presents, painting her nails.
      I have to say - even with the pain - came the great joy of watching Mary being lovingly cared for by many, many people, PSWs and nurses. These individuals went the extra mile to make up for what happened. They were wonderful people and despite the bad memories, there are many good ones.
     Hard to believe? No. Human beings, I think, are essentially caring and kind. 
     As one nurse said to me, "It's the house I work in, not us.") 
      

 

      My husband’s meticulous notes – kept every single day since this whole thing began – reads: Wednesday, May 19, 2010. (A scribble on dealings with a law firm), then ‘Mary falls overnight in the bathroom’.

      We weren’t notified immediately when this fall occurred, as is the hospital protocol – and trust me, they LOVE their protocol. It was just something mentioned in passing when we arrived for our daily visit the next day.

      “What?!”

      “Oh yes, we did a CT. No, no results yet.”

       So what happened? We got the full story from the PSWs – a whole gaggle of them – who informed us that a young PSW, an agency fill-in, had been tending to Mary during the night. He took her to the washroom around 5 to 5.30 a.m. He had never worked with Mary, did not know her, did not know Mary could become agitated. After all, most of the time Mary thought that she was okay, despite her head injury.

     One PSW, who was working further down the hall that night, told us she had warned him. “Don’t turn your back on her!”

      Did he heed this advice? No. During this trip to the washroom he placed Mary on a commode chair. These chairs have arms and seat belts to secure the patient. And these seatbelts are crucial for patients like Mary.

      He did not do up the seatbelt to secure her – a woman who is all arms, legs and spastic movements. He left her sitting there.

     And then he left the washroom to find a fresh diaper.

     Now a really good, professional PSW who knows the job will keep a stash of those diapers on the shelf in the washroom. Or they’ll make sure they have one under their arm as they wheel the patient to the washroom.

     This man hadn’t worked at the hospital long, hadn’t worked in Canada long, according to the PSW who told us about the accident. He was new to absolutely everything.

     So Mary, the new Mary who couldn’t control her limbs very well, crashed to the floor – that hard, dirty washroom floor – and hit her head.

       A CT scan was ordered, as far as we can tell, a few hours later. That would have been very early in the morning on the 19^th – say sometime around 7 to 9 a.m. The results were not available when we wandered in to see Mary that afternoon, nor would they be until close to midnight.

      To say we were mortified at the news of the fall would be an over-simplification. I think the words "devastation, anger, disbelief, horror and incredulity” might be more accurate. And this was happening not to some stranger, but to our poor child, who had already endured so much on this hospital floor.

    You couldn’t make this up, we told ourselves. And as newspaper people, we thought we’d seen and heard it all.

 

     Keep in mind this was Mary’s fifth fall in that hospital.

     A review:

 1: She fell getting out of bed post-surgery, April 8, 2009, and landed on the floor. She was alone in the room with no one to assist her. She was 24 weeks pregnant and weak, considering the anesthesia, the VP shunt replacement (down five layers through the brain, one surgeon told me),  was confused and suffering from double vision.  She was CT’d, put back to bed (left alone without a PSW or any spare soul to keep an eye on her), vomited (had been vomiting continuously after that fall, I was told by an anonymous source), and aspirated. She was found “cyanotic,” according to the scant notes, and a Code Blue was called.

     Had no one read her notes from the previous hospital? This pregnant woman hadn’t stood or been able to keep food down for ten days prior to that surgery. She had been telling us about conversations with people she hadn’t seen in 15 years.

      2: Mary comes off a bed in July, 2009, in a room where there is a PSW on duty and blackens her knees to her ankles. Oops.

      3: She pitches forward in her wheelchair during physio in March, 2010, because she isn’t tied in and she puts teeth through her lip and gashes her chin when she lands face-first. She needs stitches. A phsyio and assistant had been right beside her.

       4: She comes off the end of the bed on Easter Sunday, 2010, (a mere month after the physio fall) and gashes her head and needs more stitches. That blow led to a blood clot. Once again, she was in a four-bed room with a PSW.

      5: She falls from a commode in the washroom after a PSW fails to secure her with a seatbelt.

      Back to that last fall – the one from the commode chair: Later that day, about 16 to 17 hours after the fall, we notice Mary is not entirely herself. This concerns us, especially since she’s still trying to come back from the last rehab fiasco and has really been struggling.

       We are wondering how an institution that considers itself a leader in research and medicine can employ people (a few, anyway) who keep dropping or allowing patients to fall – and with disastrous results.

     To say we were – and still are – angry about this incident, would be too mild. What we felt was more like a deep and abiding, roaring, towering rage. It was an anger so horrific that my heart races and skips beats even as I write this. 
      (Oh yes, a few cardiac problems since all of this began.)

      We asked and we asked and we asked all that day after the fall. What are the results of the CT? WHERE are the results of the CT? 

     We leave the hospital for the day, leave Mary dazed and unwell and head home. We still haven’t got the scan results and I start calling from home almost immediately. It is just after midnight – and yes, it’s called the witching hour for a reason. We get our answer, not from a doctor, but from one of the nurses on the night shift.  She is a lovely, sympathetic woman. She was one of our favourites.

       Yes, the CT results were in and Mary had a brain bleed as a result of that fall.

       Dear God. Now what?
       “She will need surgery to drain the bleed sometime today, (it is now about 21 hours after that fall), maybe a craniotomy,” the nurse tells us.

     We are advised to call first thing in the morning, see what is scheduled and get an update.

     We are back at the hospital first thing. Mary is out of it in a four-bed room and the atmosphere around her – and us – is muted. It is now May 20, a Thursday, and a long weekend is looming. No one is saying much, except for a bouncy senior resident who comes to us every hour or so and says, “Soon, soon. We’ll be taking her down very soon.”

       I look at my watch. It is nearly 4 p.m. and Mary fell around 5 a.m. the previous day.  About 37 hours have passed since the fall and the beginning of the bleeding. What the hell is going on here? There is no rush, no hurry to fix this young woman.

     “Soon,” we’re told again, but by now we’re pacing, furious and worried sick.

    In the hallway we run into Mary’s nurse practitioner. He perches on the edge of a gurney and cries. “Of all the people to have this happen to.”  

     I’m speechless. I had no words left in me. Not a one. And maybe that was for the best because there may well have been an assault had I uttered even one word. I was beyond anger.

                   Mary in recovery, following the first craniotomy 

                                   The day after the first craniotomy. 

      Mary is finally – in the early evening – wheeled into surgery. It will take four hours, this surgery, and at the end, the young senior resident neurosurgeon comes to us to tell us he thinks he got it stopped. He had to remove a blot clot, too. That was from the fall off the end of the bed the previous month, he tells us. We are completely floored by this news.

   Still, he thinks she’ll be fine. She’s in recovery  and she will return to her bed on the floor shortly.

     Paul goes off to make phone calls – it’s almost midnight – and Alastair and I lurk outside the recovery room door. Mary is the last patient in there.

     Someone comes out and leaves – a nurse, I think – and the last one standing in recovery, an older nurse, sees us and tells us to come in. She’s sorry, it’s all over her face and she knows what has happened. How else do you explain letting two crying family members into a recovery room where they just aren’t ever allowed to go, let alone at midnight?

    Mary is pale and bruised, her head bound in white. She is utterly quiet. She doesn’t move. Alastair and I hold her hands under the blanket and watch. When the nurse, who talks to us kindly and with hope, establishes that Mary is stable, a porter comes and takes her back to the floor.

      We follow and meet Paul back in Mary’s room. She is placed in a step-down, or semi-critical care room (two of these rooms were brought back right after Mary’s initial incident. No coincidence there!), where she’d been the day before once they had established she was suffering from an intra-cranial bleed.

      There is one nurse for two patients in this room and they watch and monitor her carefully, with plans for another CT in the morning.

     We go home. All three of us are upset. Now what?

   

      Was it over? Nope.

       Before we’ve even got our coffee into us the next morning we get a call from the hospital that the bleeding has not stopped, that Mary is still hemorrhaging and needs another craniotomy. We are to get down there fast.

     There would be no delay this time, no pacing the hallways wondering when an OR would open up for the procedure.  And this time, it will be the chief of neurosurgery performing the craniotomy.

      I am shaking. I know this is serious and possibly fatal. Mary had been taking an anti-clotting drug called Fragmin because she was largely bed-ridden. We suspect this is causing the problem.  

    (An aside here: the physiatrist who saw Mary at rehab, who saw her many times when she was still in the hospital because no one else would help us or deal with Mary, and who still sees her today, had been fighting with the hospital to get Mary off the Fragmin. Notes flew back and forth from this very highly reputed specialist and the hospital floor with its herd of residents. No. They would not take her off the Fragmin. What if she threw a clot?)

       Paul and I drive to the hospital. It’s a half-hour drive. We’re in shock. I’m still shaking and we’re both wondering how on earth this could keep happening again and again to our daughter: The social worker; the advocate for people with disabilities; the walker, swimmer; the traveller; the human rights advocate; the animal lover ... the lovely mother.

     I turn to Paul and ask – because I feel the subject has to at least be broached as a reality and outcome:

      “Are you ready to lose her?”

      He keeps driving and says nothing for several seconds. But I watch his face and I can see he is coming to grips with that possibility.

     “No. No. I am not.”

      Okay, I think. We’re ready to fight on.

      We wait in the big waiting room this time. The one with the nice flowery pictures, the genteel volunteers with their nice hair-dos and pretty smocks, the little shelves filled with books for quiet reading (so, who the hell wants to read when you have a family member on the verge of death?)

    The whole place is a little surreal with its nice furniture and carpets.

    Two surgeons, fully garbed, fresh from the OR, approach us. They know who we are. They don’t have to have us paged, they don’t have to have anyone point us out.

      The resident who performed the surgery the previous day is with the chief of neurosurgery. We’ve never met this man before, but we’ve seen him about. He seems pleasant, intent. He tells us Mary is doing well, that the surgery is over and he has had her placed in neuro ICU.

     Oh no. Not ICU again.

     I look at him and burst out, almost shouting: “Do YOU know how this happened to her. Do you?” I am so angry I could explode all over the nice carpet and furniture.

      The neuro chief looks down and flusters a bit.

       “Yes. We just can’t be trying to heal people and having things like that happening.”

        I'm only somewhat mollified.

       The resident assures us he will be watching and monitoring closely over the long weekend and he’ll be “all over the situation,” he promises, and let us know if anything changes in Mary’s condition.

       We ask the neuro chief if the bleeding can re-occur. Yes, it can, he tells us, but he thinks he got it stopped and he has inserted a drain. He is confident that this is the end of the problem.  

     We thank him profusely. We know his hospital, and the staff at that hospital created our beautiful daughter’s brain injury, that she sustained many other falls and injuries, but still, it is the right thing to do. He has saved her life.

                 Mary in ICU after the second craniotomy, May 21, 2010

                      Back on the floor, Mary is in a great deal of pain

       Mary looks even worse, if it’s possible, when we see her in ICU. This second craniotomy has really done her in. Her face is more swollen and there is a great deal of bruising around her eyes. A tube with blood running from it comes out the back of her dressing.

     I nearly faint. The last time I saw a tube like that was in a patient who lay next to Mary in ICU a year earlier. It was the end for that patient. He died.

      Thankfully, Mary’s sojourn in ICU is brief this time around and she is soon moved back into the step-down room for a few days.

       We learn from the PSWs that the man who let Mary fall was upset. Well, that’s good, we say. Personally, I thought he should be downright sorry and begging someone’s forgiveness. (But wait, he’s not even a hospital employee. He works for an agency that supplies fill-in staff.)

      So no, that isn’t going to happen.

      “But you know,” continued the PSW, “I told him accidents happen, right? It was an accident.”

      I just want to say one thing: Accidents don’t just happen. There is always an action that causes a reaction. Things don’t occur without some culpability on the part of one or the other party.

      It isn’t possible. Accidents don’t fly out of the air. They are caused. Period.

   

      But this hospital, (at least in our experience), seemed to specialize in accidents when it came to our daughter, even as they had posters all over the walls warning staff about patient falls and caution and good care.

       

      I love a nice bit of irony as well as the next person, but it was getting utterly ridiculous.

 

     We had had enough. The holiday weekend was a blur of fear, loathing, tears and promises (on our part) of getting even.

      We marched ourselves, first thing Tuesday, into the offices of the patient affairs department. We were beyond angry. Rehab won’t take Mary, nursing homes won’t take Mary. And at this point, it seems the hospital is trying to kill Mary. She is lying upstairs bloodied, bruised, her face swollen.

    We demand 24/7 care with a PSW to sit with her, feed her, change her, make sure she doesn’t kill herself, or have someone else kill her through more negligence, at least until we try and figure something out and find a place that will take Mary and care for her. 

    There’s a tinkle of laughter from the patient affairs woman, who tries to keep things light. She burbles on about a lot of things, how she loves the TV show “Castle,” and a whole lot of other nonsense. She calls me a “gentle advocate,” which makes me really snap and I give it to her with both barrels. Does she have any idea what’s going on on that floor? I tell her. In no uncertain terms.

       But they’re a stick-together bunch, those hospital middle-management ass-kissers. I’ve got to hand it to them. They sing the management line like a bad Broadway musical.

   (And folks, let me remind you. This production is brought to you by … YOU, the taxpayer!!)

     “Oh no,” Mrs. Castle-lover says. “You’ll never get that. 24/7 care? Oh no! When I think of poor so-and-so (the floor manager) and the budget ….” (Another tinkle of laughter here.) “Oh no, you won’t get that!”

   But yes, we get that. And we get it fast.

   And we get called into a meeting two days later where Mrs. Castle-lover-patient-affairs-person, and the bioethics person, Mary’s original neurosurgeon, the nurse practitioner, the case manager, all of us, the floor manager and more are sitting crammed tightly into that godawful crisis room where there is one light with that dim bulb that my sister-in-law changed a year ago …. And by God, it is mighty tense in there.

     It is air-crackling, thin-wire-snapping, nerves-popping tense. I am sprung like someone about to kill – and I do – the only way I know how. With words. I unleash a volley. My husband and Bob are mortified, I can see. But really, I just have to tell them how appalled I am at the lack of care, the escaping patients, the wandering patients, the ones who try to charge at you with night-tables, the violent patients who scream obscenities, the ones in handcuffs who verbally threaten your daughter with sex acts, the patients left in washrooms …. And on and on I go.

        Well that certainly plucked the already-taut strings of tension. I was only aware of Paul looking at me from hooded eyes and Bob staring at the floor. The rest sat with their hands in their laps.

      But I felt a little better.

     We get a grovelling, mincing, mewling apology from the floor manager who says over and over and over, “It shouldn’t have happened, it shouldn’t have happened. I’m so sorry.” And are they really sorry?

    Well – I couldn’t tell you because they never took their eyes off the dirty carpet.

       “It should never have happened.” It was said at least three times.

    And then suddenly, from the corner of the sofa, where he’d been sitting like a bear, Mary’s neurosurgeon – the man who took her in and oversaw the original shunt revision when she was pregnant – leaned forward, looked at the floor manager and snapped:

     “And it shouldn’t have happened the first time, either!!”

     It’s true that time suspends itself on occasion. It’s true that it stops and that the air ceases to move for a fraction of a second. There is a void where no breath is released or drawn and even dust particles halt their drifting.

    I know this because that is exactly what happened in that room.

     This man, who’d barely said a word to us in all those months, finally admitted that what happened to Mary in the first place should not have happened.

    He bundled up the blame in a little ball and threw it across that horrid little, dingy room and directly into the lap of the floor manager, who turned red, looked angry, belittled and horrified.

     Now if we could just march the guy into our lawyer’s office and have him repeat that …..  

      Easier said than done.

     

       But Mary, battered, bruised, wounded and confused, had her 24/7 care. They were falling over themselves – at first, at least – to ensure she was very well cared-for.

     And Mary seemed to snap out of it and thrive for about five weeks following the craniotomies. It was a period of great hope; she looked brighter, she seemed more able.

                          Three weeks after the craniotomies. 

                Mary and Bob at Pat's Archer's 90 birthday, June 2010.

    

       But like all the other times, it was not to last. Brain injuries must be the most unpredictable things in the world. She leveled out, she faltered, she started to struggle again.

       Was it just too much on top of everything else she’d suffered? Did she look around and just give up?

       We do know this one, true and abiding thing: Mary has not been the same since those craniotomies.

      It took hours for them to get to the brain bleed in the first place, and even when they did, she continued to bleed anyway.
     What did that do? What further damage was done? We asked ourselves these and so many other questions. And we asked those questions of the hospital staff, too.

    But as usual, we got no answers.

                            Bob, Alastair and Mary, June, 2010

      NEXT WEEK: Trying to find a place for Mary