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

                

Life on the ward

    

    Mary as a bridesmaid in 2006, five weeks after the original VP shunt operation, and still suffering from double vision. 

     We were – our family of four, and Bob – frog-marched into this tragedy, unwillingly. We didn’t want it. And once it hit us, we berated ourselves for weeks and weeks for not staying with Mary that night. We roll it over and over in our heads and, at times, we blame each other. It’s just what happens. It brings you close, but it sets up private grievances and grudges that eat at your soul. It’s not nice.

      “If only we’d sat with her through the night … Why didn’t we stay? … We were tired, but ….” It just goes on and on like an old tape running endlessly.

     That frog-march has had its repercussions, ones that affect us to this day. Hindsight is futile and corrosive. Forward is the only way – if you can manage it.

   

      Isabella was born, Mary was waking up and moved from ICU the day after the birth, becoming just another regular patient. Except, she’d never be a regular patient, as we’d discover. She’d be a problem, one the hospital – despite its considerable responsibility in creating the situation – would heave onto our loaded plates, time and again. If I had a dollar, as that old saw goes, for every time we were made to feel like this whole thing was our fault, I’d be living in a big flat in Vienna. With a butler and valet – preferably Bates.

      Life on the floor of a big hospital: Well, first off, you might not mind it so much if you are there for a few days. As a patient, you recover as best you can, you put up with the noise, the constant confusion, the lights and bustle – and then you go home, where the real healing begins, and you consider consider your options.

      But three and a half years? It left us all half crazy, suffering from post-traumatic stress and chronic illnesses we now can’t seem to shake.

      I’d hung around hospitals a fair bit over the years with Alastair and his many ops; for my father, who died of cancer (he was treated beautifully at another Toronto hospital and in Orillia), my aunt in Nova Scotia, my mother,  (another ‘doctor knows best’ drama there). But this floor was a real eye-opener.

      First of all, there didn’t seem to be enough nurses. Period. And secondly, they only have to check on a patient every four hours. That’s the protocol. It’s written down somewhere in the Provincial Rules for Busy Nurses in Under-staffed Big City Hospitals mandate. Learn to live with it.  We didn’t know that then, but we sure do now.

     There seemed to be almost as many – or possibly more at times – personal support workers as nurses hanging around during the day shift and it is these people who really carry the load, changing diapers, washing patients, moving them, getting them dressed, making them comfortable.

   You see, I thought that’s what nurses did. But no. They seem to spend a lot of time sitting at computers updating charts when they’re not administering drugs, while it is the PSWs who do the dirty work. 
     Like every field of work today, nursing has changed, too.

     Don’t get me wrong: We met a lot of lovely nurses and there were fabulous PSWs who looked after Mary. They were kindness and compassionate incarnate. We came to admire and like many of them.

    But see, there was this one nurse – she was Mary's nurse the night of the ‘Big Incident’, when our daughter was found alone, after a fall, lying on her side, ‘cyanotic’ after choking on her own vomit – and that nurse was there forever. While all the other really bright things moved on or up, this one remained on the floor the whole time we were there. She was never assigned to Mary again, and she never said a word to us about that night. Hell, to our horror, we found she didn’t even make detailed notes about what happened that night.
    (But, we were told by a hospital records employee, there is a tendency to NOT make detailed notes when incidents such as Mary's occur. Well, that's pretty handy, isn't it? Then families don't know exactly how their loved ones are hurt, die, suffer.)

    I couldn’t look at her. My gorge rose every time I saw her. I spent a lot of time getting in the frigging elevator trying to escape that floor and those people.

      My crisis therapist put it this way. And this really sums up how I felt about those three and a half years on that floor: “It’s like you’re going back to the intersection every single day where the accident happened, and having to see all those first responders time and time again.”

     Post-traumatic stress is a real and terrible thing. It leaves you sleepless, with nightmares, a pounding heart and acute anxiety prompted by something as simple as waking up and opening your eyes. Scary. And it goes on and on and on.

     

    To be fair to all nurses, the system in which they toil is not working. They put in long hours, a lot of doctors treat them badly, their duties have changed, the whole damn system of treating patients has changed and I frankly don’t think anyone is keeping up with it. The level of middle management is daunting, they have rigid rules and patients and their families can be a real pain in the butt.

     And then patients with brain injuries are a special breed: They are confused and so they escape, they tumble, they wander. I always thought there should be far more nurses on this particular floor because of this and time and again we saw them rushing here and there, snappish, angry, rude and far too blunt.

     I don’t know much about staff turnovers on nursing floors, I suppose it can be high at every facility, but over three and a half years, we were astounded at the number of nurses who fled to other floors, moved on to ICU, more education or other hospitals. We often wondered what the heck was going on and quite often picked up on a dark undercurrent of politics that shadowed the floor – and ultimately, in our case – the care on that floor.

     (And I’m not exaggerating: When Mary suffered the final fall at that hospital, in May 2010, which resulted in two craniotomies in 36 hours, even the neurosurgeons were aghast. In a meeting a week later, after we endured a grovelling apology from the floor manager who said, “It shouldn’t have happened,” Mary’s main neurosurgeon leaned forward and snapped at her, “And it shouldn’t have happened the first time, either!” This – a reference to the April 8, 2009 incident that changed Mary’s life forever.)

     So. We weren’t imagining things. Someone, somewhere in government ought to take a really good look at how and where hospitals are using their funding, because it seems to be that patients – the very reason for their existence – are getting the short end of the stick.

     If they really can’t hire enough nurses, then go back to the good old days of the ward system, knock out all the walls and then the patients can look out for each other.

    One harassed overnight nurse told me that at one point, when another nurse took her break, she could be in charge of 12 patients. Worse? The night this nurse was on duty and left with 12 patients, most of them were ringing their bells, she said.  Go figure.

   

     So we were on high alert for three and a half years, and still, despite our vigilance, Mary suffered. Really suffered. Is this the best our system – or this particular hospital – can do?

     

    The awakening was painful. By the time Mary reached the floor she was quite aware; those pregnancy hormones were on the wane, though, and she soon lost the ability to speak with us clearly. That was devastating. No one could tell us why.

        The first day Mary was brought out of ICU she was put in a room with three other patients. They’d economically done away with the semi-critical care rooms – or step-down rooms – sometime in the past (they sure brought ‘em back within a few months after Mary’s mishap. Coincidental? We think not!), and there was one personal support worker assigned to four patients in these rooms, to keep an eye on them, help change them, tend to them, etc.

    Only problem is, if they have to change or tend one of the four patients, the curtains are pulled shut around that patient, and – well, you’d never believe what the other three get up to when they’re not being watched. They escape. They try to clamber out of bed. They pull out tubes, rip out needles and act like kids. Not their fault, though. It’s all part of having a head injury.

                    Mary taking a break from her 'boxing gloves'.

    

     For some reason, I got there late that first day Mary was moved to the floor. Paul and Bob were there, though, trying to calm Mary down, sweat dripping from them as they held her hands and arms. It took 30 seconds of standing at the end of the bed, watching this, for me to feel the heat and I threw a complete and absolute hissy fit. The room was stiflingly hot. It had to be 30 degrees C in there.  I thought I’d pass out – and my head wasn’t injured.

     “This room is too hot! It’s unbearable. These poor patients!” I screamed. “What’s wrong with this place? She’s not staying here!”

     She was promptly moved to a semi. The only thing was – yes, we had to sit 24 hours a day and watch her. Paul took the evening shift, I sat overnight with my laptop. Twenty-four hours later, we had to give in and Mary was put back in the room, which by then was much cooler.

    Someone had at least listened to me shrieking about the unbearable heat.

     Was I embarrassed by my behaviour? Nope. Not a whit. They had done this to my daughter and at this point I was having no nonsense from anyone. I suddenly didn’t know myself: the polite woman who was raised in a manse and taught that civility and “being nice and nice” was the way of the world was gone. 
    That’s what a frog-march does to you.

    I miss the old me. I never wanted to be this way.

   Mary settled into the cooler, four-bed room again. When I arrived on the second day, her milk was coming in and her breasts were sore, the nurses told me. She’s very uncomfortable, they said, and I should get a cabbage.

     “What?”

      “Go buy a cabbage. We’ll put the leaves under the binding.”

     “O … kay.”

       Paul was parking the car in a nearby lot (he figures he spent about $8 grand in that parking lot over the years and is particularly attached to it, even today), and I called his cellphone.

        “Go buy a cabbage – green or red, doesn’t matter.”

        “What?

        “Mary needs a cabbage. Go buy one. Don’t ask questions.” What was wrong with the man? I wasn't speaking Russian.

        Twenty minutes later, a very bewildered Paul crept into the room with a cabbage under his arm. Clearly he didn’t know what to do with it.

        “It’s for her breasts,” I tell him. His eyes widen.

       “They say,” I nodded to a group of nurses, “that the cabbage leaves relieve the discomfort.” I shrugged, he rolled his eyes in mortification and scurried away.

        But it worked. Mary was so much more comfortable with big green leaves sticking up over the binding on her breasts. We just keep sticking nice cold, fresh leaves in every few hours and that particular medical blip passed.

        The next blip is more troublesome. Brain-injured people can be very agitated and they lash out. They pull out tubes, argue, punch. There are no filters and they say terrible things – or things that don’t make sense.

       A youngish woman who’d suffered some form of brain damage asked Paul one night if he was “a woman.”     

    “Oh woman, woman. Are you a woman?” she crooned.

     Six feet, 200 and many pounds plus, the heavily bearded Paul drew himself up and huffed, “No, I most certainly am NOT a woman!”

        “Don’t engage the patients, dear,” I told him. “She wants a nurse. She can’t find the right word. Go find her a nurse.”

                The trauma chair and a visit to the great outdoors

                           with grandmother, Pat Archer.       

      In Mary’s case – it was escape. She wanted to be anywhere but there. She’d fling her legs over the rails – not understanding that she couldn’t walk – and try to get out of bed. Over and over, we’d put her legs back in. She’d pull out her feeding tube. She was restless, unhappy and confused. And she had no memory.

     They asked our permission to put gloves – more like huge white boxing gloves – on her hands, to keep her from pulling out her feed tube. We reluctantly agreed.

     Then they asked if they could restrain her because by this time, Mary is aware enough to know that this situation just isn’t right and that she needs to go home, go to work, go somewhere – and urgently. The panic that rose in her eyes at times was terrifying to see.

    Hospitals do not like to confine patients in any way but there are times when they have to – for the safety of the patient. So in addition to the boxing gloves, Mary had big Velcro-ed strips tied to her wrists and then the bed to keep her from trying to get out. It was heartbreaking and she’d glare at us and try and sit up.

    The gloves, the restraints … it didn’t dim that urge to get up and leave. Mary tried and tried to escape, to get out of bed, to go … somewhere, anywhere, in her confusion. (And so did many other patients and some of them were quite successful!)

   More than once we stood in the doorway and tried to stop them. More than once one of us would go over to a patient intent on de-tubing themselves and urge them not to do it. Once we managed to keep a weak, dazed patient from getting out of bed; clearly they would have done great harm to themselves.

     Where is the staff? Well, busy, I guess. Somewhere. Lots of times visitors or members of other families intervene and call for help, or step in and try to stop someone from running.

     I remember one summer Mary had a very elderly brain-injured roommate whose greatest joy was to escape from the hospital – wearing her fuzzy slippers, long nightgown and fleece housecoat – and head to the nearest coffee shops a few blocks away. Security would go on the hunt and she’d come back, totally disgruntled and ticked off.

    One day, when there seemed to be no one watching out for her, I stood spread-eagled in the doorway urging her to go back to bed. She stood, armed with her small bed table as a battering ram, a gleam in her eye.

     “Don’t do it, (I’ll call her Alice)! Don’t you dare!”  I envisioned myself down in ICU suffering from multiple abdominal and leg injuries.

     She was deaf as a post and I knew this wasn’t going to work. Thankfully, the PSW reappeared from behind a curtain and all was well – for a few minutes anyway.

      Alice did manage to escape later that day.

      It was a painful time for all of us, trying to get Mary to understand that she had to get better first, that she couldn’t walk yet, that she could hurt herself by getting out of bed. She just didn’t understand – the restraints, the mitts, the being in bed. She was fine, she’d say.

    And then one day, as we were trying to hold her down, she stopped, looked at us, tears streaming down her face, and croaked through her trach, “Why are you doing this to me?”

Next week: Getting ready for rehab

    

  

      

      

       

Isabella arrives

    

                            Mary and Bob, taken in St. Andrews, N.B.,

                            the summer before Isabella was born.

     You think there’ll never be a child more perfect than the one you give birth to; they are perfect in every way, despite their little smashed-in faces, bald spots and droopy skin. At least that’s what I thought. I thought my kids – born two months prematurely, slightly downy, uncooked-looking, rushed off to incubators at Sick Kids hospital – were fabulous.  Very tiny, very wrinkled, but fabulous.

       The fact our kids – twins – survived was always a source of amazement and wonder to us, so as they grew up we were knocked out by everything they achieved. We felt blessed. They were special and we were so very thankful – despite Alastair’s many hospitalizations for his cerebral palsy, the early ops to drain cerebral hemorrhages, his orthopedic ops, run-ins with seizures, his various therapies – for their very existence.

       During April, May and June of 2009, we didn’t so much feel blessed as cursed and angry. Our daughter – the healthy, over-achieving twin – was heavily pregnant and still in neuro ICU in what they call “a heightened state of awareness.” But she was nowhere near able to comprehend what had happened to her. If we pulled away the hissing oxygen and covered her trach with a tissue, she could, and would, talk to us.

    If Mother’s Day was no picnic, Father’s Day was even worse; both Bob and Paul were caught up in a maelstrom of grief and bewilderment. Other than cry, you don’t really know how to act as a parent in an ICU.

     I’d bought Paul new Birkenstocks for Mary to give him on Father’s Day. When I covered her trach and asked what she thought about the gift, she croaked, “How much?”

     I was ecstatic. She was still in there, my money-conscious, economic Mary. She may not have been fully aware of her surroundings but the essential Mary was – and is to this day – still there. (It’s just the amount of work we have to do to get The Essential Mary to communicate with us.)

     It's almost three months into her ICU stay and Mary still has a number of visitors coming and going. When I asked her one day what she thought of a particular individual, she looked at me, frowned and whispered: “You might say she’s an enigma.”

      The nurse and I exchanged shocked looks. But this seemed good!

     And so we carefully watched Mary’s slow recovery, from lying prone, to sitting up briefly in the bed and working with physiotherapists. The thing that really terrified us at this time was that she seemed to have no memory: We’d ask her about something and she’d be puzzled, shake her head. She called Bob ‘Doug,’ her ex-husband’s name. I can’t imagine how traumatic this must have been for him. We’d talk about things – like her cat Lucy, acquired more than a year earlier – and she’d look at us blankly. We determined, by gentle questions and responses, that she had completely lost all memory of a year, possibly two. She just couldn’t remember events, travels, her problems with the shunt. It was terrifying for us – for her.

      And no one really knew why, and no one – medically – was saying much. She was alive. But … but. We discovered – in the most difficult way possible – that there’s just no accounting for the resilience, the sheer will and power of the human spirit. Never call time unless you’re really, really sure.

       There were many ‘team’ meetings about the baby’s delivery date. And thankfully, there was no more talk of palliative care. But what lay ahead now?  What were the chances her memory would return? What other damage had been done? Clearly she had made it, but what would be the consequences, mentally and physically. We just didn’t know.     

    One afternoon, a lovely nurse practitioner from the floor came into ICU to talk to us. He would be overseeing Mary’s care once she left the unit. This man would play a crucial role in Mary’s life for the next three and a half years. He would proved to be a fabulous individual and one of the few people we ever really trusted. He saw us all at our worst. He tried valiantly to help us solve so many problems. He was our go-to guy. And we miss him.

      But his introduction that day, near the end of Mary’s pregnancy, was a real reminder this cossetted stay in ICU was about to come to an end: Mary had been treated like a china figure wrapped in cotton, monitored, watched over and treated wonderfully by ICU staff: There were two patients, they figured, not just one.

     The delivery date decided on by the obstetrics team was June 25. We were told Mary would be taken from ICU early in the morning – we were to be at the hospital at 9 a.m. sharp – and they would do what they called a “cold” C-section; no induced labour, no discomfort. Mary would be given a general anesthetic and returned to ICU to recover for a day and night.

      We were, by mid-June, exhausted beyond belief, awash in uncertainty and fear. We had gone from a frantic search for grief counselling, to utter confusion. None of us ever believed we could become caught up in such a situation; and there was poor Mary, completely unaware of what was going on.

    Waking up in the morning, I’d think, for just a few seconds, that I’d had a nightmare and that if I could get out of bed, it would go away. Then it would hit me, all over again. This was real. This was serious. And there was a baby about to born to a mother who couldn’t even remember she was pregnant.

    

      It was a few days before the scheduled delivery date and Mary was squirming around with Braxton Hicks contractions.  OB nurses sat and watched and timed them. It might be the real thing, after all. I patted Mary’s hand and said, “Well, you’ve got to expect this. You’re eight months pregnant!”

      She turned to me, eyes wide in horror and I covered her trach. “What? What is it?”

       “But I was taking the pill!” she croaked, a horrified look on her face. I didn’t know whether to laugh or cry. Not only did she not know where she was, she wasn’t aware she was pregnant and amazingly, she was totally unaware of her enormous belly. Mary was completely disconnected from her body.

    We sat one night with her and waited out these false labour pains, receiving permission to stay well past visiting time. It was after 9 p.m. and we were all tired, wondering if Mary will go into labour before her scheduled C-section.

      The ICU was humming along. There is always something to check, drugs to administer, tubes to change, machines to turn off. It’s intensive care for a reason.

       We’re murmuring in the corner – at this point Mary has a bed with two huge windows – and we watch the night sky and her. Down the short corridor there is a flapping of curtains, people coming and going, cries and sobbing. Within 10 minutes – 10 very short minutes – a young man dies from wounds sustained in a violent fight, and right next to him, a young woman, 22, passes away as the result of an auto accident.

      So senseless. So very tragic. The ICU falls completely silent. It’s as if even the nurses have stopped breathing. Heads lower.

     “This happens when deaths occur,” the nurse whispers.

     “I don’t know how you do this,” I tell her.

       But it reminds us, as wrapped-up as we are in our situation, that we are not alone when it comes to loss or tragedy. We still have Mary. And what’s more, we have a new life to look forward to – and very soon.

      Mary’s false labour stops, she settles down for the night, the OB nurse leaves and so do we.

  

                                                 Bob and Isabella

     Thursday, June 25. This is the day. We get to the hospital – Paul and I and Alastair, Bob, his mom Lorraine and stepdad Dave – and we are sent to a waiting room outside an OR. Will they allow Bob in the OR? There is some confusion right up to the last minute about this as he suits up and puts on a head net. Well, maybe … But no. He will be standing in a room close by and the baby will be brought to him immediately.

       Everyone vanishes and we are left for quite a long time with the TV – which announces that Michael Jackson has died – a pile of old newspapers and nerves. Very bad nerves. We are assailed by what-ifs.  I worry not only about the new baby, I worry about MY baby. She’s out cold, having a C-section and being delivered of a child she very much wanted – even though she can’t remember that fact. And she is totally unaware, can’t remember a thing. I want to feel joy – great joy – and all I feel is fear – deep, grinding and abiding fear.

       Masked faces appear from nowhere. There seems to be three or four of them and they’re quite jolly, all hollering at us to give them our cameras. One is a jubilant obstetrician, the others nurses and residents, among them, the Irish woman who administered the many ultra-sounds. They’re all so happy and overjoyed. But I feel numb, afraid.

     So Isabella Grace is here: She arrived without a hitch, it seems, and she weighs 6 lbs, 1 oz. Not bad for a baby born a month early. The flurry of masks disappear and then they all charge back waving our cameras.  There’s a picture of Bob looking utterly overcome; there’s the baby, wearing a toque; how Canadian, I think.

     “Mary will be heading back to ICU,” they tell us. “Isabella is heading up to the nursery.”

       We rush to the lobby behind the double doors, just outside the OR. Bob is still in his funny suit and a nurse wheels the incubator to the elevators: There she is. Perfect. A lovely round head, Mary’s little face. She’s okay.

                            Mary, in the nursery, after her bed was wheeled 

                                 there so she could meet her Isabella

       We became, at this point – despite it all – jubilant. Something wonderful has occurred out of all the pain and horror and loss. Things were far from normal, but here was this wonderful little creature and Bob, so utterly devoted to Mary, was standing there looking besotted. 

      Later that day in ICU, I watched Mary – the new mom – deep in sleep, recovering from the anesthetic and C-section. It shouldn’t be like this, I thought. She should be upstairs in the maternity ward with that new baby, holding her – and with Bob.

      It wasn’t to be. It would never be.

      It was the end of one chapter, the start of another.

      As Bob sat beside the incubator upstairs, feeding Isabella and getting to know her, Mary spent her last night in ICU, one last evening and night of superlative care.

    Then she was moved to the floor, or main neuro ward.

      On that floor, despite the wonderful nurse practitioner, she would suffer greatly; four more falls over three and a half years. Her knees would be blackened in the first one, her face and lips would be cut badly in a fall during a physio session; she would come off the end of the bed and sustain a deep gash and require stitches.

     A month after that fall and that gash to the head, she would be left alone on a commode during the night– unbelted – and would crash to the floor. During the first craniotomy and an attempt to drain the bleeding from that fall in the washroom, they’d discovered a blood clot from the fall a month earlier. The bleeding wouldn’t stop. She’d have a second craniotomy within hours to drain the bleeding again. We honestly believed we’d lose her that day.

    She’d also have three failed attempts at rehab – and return each time with horrific infections from being left to sit in unchanged diapers, despite the fact she has never been incontinent.

     But so, so much more on that later.

     We were about to encounter the real world, the real hospital and the bureaucracy and workings of a hospital unit. Mary, a new mom, would be completely out of place, dazed, disconnected and fearful.

    

      Still, there was Isabella ....

         

                                                

                                                           Isabella

Next week: Life on the floor