Five Days of Frustration

      

   

                                         Taken in London, 2007

     We left our 31-year-old daughter Mary in good shape on the evening of April 8, 2009, some six hours after surgery to replace a blocked ventricular-peritoneal shunt. She was relieved to be feeling so much better and, at 24 weeks pregnant, happy the baby’s health hadn’t been compromised. It seemed the move to the second hospital had been a good one. But it had been quite the journey to that point.

     April 8 and 9 will always be two days in our lives we’d most like to forget. We mark them mostly with silence, trying to move on. Still, one of us will start to say, “You know what day this …” And the other will raise a hand to stop the other and say, “I know, I know.”

    

    April 8 was the day Mary was moved to the second facility, leaving a Critical Care Unit, where she was placed after the blocked shunt diagnosis, to another Toronto hospital where a prominent neurosurgeon had agreed to take the case and do the shunt revision. 

     Shunts break down all the time and are needed when the ventricles of the brain become enlarged and filled with extra cerebral spinal fluid.

     In Mary’s case, the shunt was needed three years previously due to Chiari malformation, which is best described by Mayo Clinic staff as “ … a condition in which brain tissue protrudes into your spinal canal.  It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.”   

      That misshapen bit is a problem for the flow of cerebral spinal fluid and it can cause the ventricles of the brain to become filled with the fluid and enlarge. Crushing headaches, nausea, dizziness and double vision can ensue. As the condition becomes worse, the patient can hallucinate, is disorientated and pale.

     Mary was born two months premature. Her twin, Alastair, who came along six minutes later, was diagnosed early with cerebral palsy and had a rocky and rough childhood, undergoing countless operations, therapies and brain surgery. We spent his childhood years making sure he got special ed., cognitive therapies, speech therapies, physio therapy … he grew up hard, but he turned out well.

   We had both hands in the spectrum during those years. Mary did well at school, took some gifted classes, was athletic and outgoing. Alastair worked hard for everything he achieved.

    When it came to going to university, Mary, accepted at other universities, chose Ryerson’s school of social work. She took to it with ease and became her brother’s staunchest champion. She loved her work and was applying to various graduate schools when the tragedy occurred. She wanted to do an M.A. in social work and eventually work in a hospital.

  As babies, they were regularly checked at Sick Kids Hospital, where they spent their first three weeks of life, and Mary, who always did have a large head (“just like Aunt Mae,” we’d say) was checked many times for hydrocephalus. I recall doctors examining her closely for the condition, sitting in dark rooms with residents who shone flashlights through her tiny head. No, she didn’t have hydrocephalus, we were told.

     Again – had they used something other than a simple flashlight, I might not be writing this now. 

     But she did have it - and probably from birth. God knows how it was missed during all those checkups. It’s just she didn’t present with symptoms – “her own body compensating,” we were told, as she grew. And things were fine until she was 28 and suffered from a brutal autumn of bad colds and sinus infections.

    She was diagnosed after multiple visits to doctors, vertigo clinics and finally, a CT scan, but only after a rocky winter and spring filled with nausea, dizziness, vision problems and fatigue.

    These shunts get old, blocked, break down and get replaced, lives move on. It’s a common enough thing. But Mary was pregnant and the pregnancy had probably contributed greatly to the shunt’s blockage.

      The shunt involves a tube, or drain for the spinal fluid, which winds from inside the brain down the back of the head, along the neck, between the breasts and is fed into the abdomen. You can see the drain if you look closely enough when Mary turns her head, a thin line under her skin. The pump is a small bulb-like thing that you can feel if you run your finger over her skull. Doctors urge patients not to press too often on the pump.

    As the fetus grew, the drain likely became blocked and the pump stopped working.

    And as Mary was so terribly ill, hadn’t walked or eaten in nine or 10 days, we assumed when they planned to replace her shunt at the second hospital she might get a little extra care following the revision - as she was suffering so, so much and from so many symptoms. Wrong.

    The days leading up to April 8 and 9 were complete and utter nightmares, each filled with a new shock in a healthcare system that doesn’t seem to communicate very well, even within one hospital.

    And it seems, so we learned, that all hospitals are run by hoards of residents, clever young things who are just learning their specialties, highly educated and honing their skills under the supervision of surgeons and specialists. They are like apprentices who are nearly there – but not quite. It is frightening.

     Terribly ill and as yet undiagnosed at the first hospital – where the original VP shunt had been placed in 2006 – Mary told me, in a dazed and disoriented state, that she knew she was going to die and she was okay with that. “But I want you to make sure they save the baby.” 

     She was at her wits’ end, too ill to fight on. Mary had yet to be admitted and was lying on a gurney in the ER, where a resident assured us it wasn’t her shunt, it was fine, it wasn’t blocked. “See?” he said, pressing the pump that lies at the top right of her head. “It’s fine.” He was quite nonchalant about it all and my husband and I were becoming angrier by the minute.

      We were appalled – and scared. It was an inkling of some further horror yet to come.

     The comment about knowing she was going to die and that she was okay with that – a young woman just turned 31, pregnant, vulnerable and as yet undiagnosed – was just too much for myself, my husband Paul and Mary’s partner, Bob.

    “It’s not okay by me,” I said firmly. “I’m going to do everything I can to make sure you and the baby are fine.”

    But it would prove harder than we thought.

     Later, on the fourth day of her admission in the first facility, after days of faffing about with residents, I lost it, literally.

     The ultimate reason? A resident had told us she could relieve the pressure by draining cerebral fluid.

     “This could cause a miscarriage, of course,” she added.

     Well, we didn’t want that, we told her; what we did want was a diagnosis and for Mary to be moved as quickly as possible to a facility where there was an OB department. They’d done enough messing around, sending her in the middle of the night in an ambulance to Mount Sinai, where a duty OB took one look at her and said, “no, it’s not pre-eclampsia.”

     Back at the hospital, the resident, without calling us, went ahead and drained 50 ccs of cerebral fluid from Mary and told us when it was over. The procedure offered her only a few hours of relief.

    But getting back to the night I lost it: One of Mary’s friends had come by and Mary was offering her non-existent pizza. “My mom brought it.” Karen’s eyes widened and she turned to me, eyebrows raised.

     Bob, at this point, had gone home, having spent almost 40 hours straight by Mary’s side. He wasn’t making much sense himself and was beyond exhaustion.

     Mary also told Karen and I that she’d been talking to people she hadn’t seen in years. I was really becoming alarmed. She said the surgeon who had done her original operation had been by and I knew this wasn’t true. We hadn’t seen hide nor hair of the man – and never did.

     Not once during that five-day period did he come to see Mary. Her last day on the floor, the night I lost it, the resident came along with a piece of paper with an appointment on it. She told us the surgeon wanted to see Mary in his office in 10 days.

      “You ARE joking, are you not?” I snapped. “She can’t even stand!”

      The resident conceded it was bad and that Mary had to be moved on to another facility sooner than later. 

     To this day, we are astounded at the arrogance of this doctor who had a seriously ill patient in the hospital in which he did all of his surgeries, where he visited those patients, had an office …. And not once did he come to see the woman he treated three years earlier. She was pregnant and extremely ill.

    We are convinced if he’d seen her in the first day or two the outcome of this whole thing just may have been different.

     So, just who do you trust?

     

      Later that night, as Mary deteriorated further, I marched, as only a mother can, to the nurses’ station, slapped my hands on the counter and told them I would stand there until they diagnosed Mary and did another CT scan. I was angry, furious and terrified.     

  (I’ve always believed dignity and reason are a must for solving life’s problems, but both fled the scene that night. I don’t know that they’ve returned yet. I sure haven’t seen them.)

     My anger must have shown; the CT was done immediately, a porter and myself accompanying Mary to the bowels of the hospital where a kind young woman was working alone in an empty diagnostic imaging suite. Mary was so nauseous we had to call up for Gravol. A nurse brought down a pill, which Mary couldn’t swallow, so she had to return to the floor and come back with the drug in a syringe.

     Mary was making no sense whatsoever by this time.

      I called Paul from the suite’s waiting room at 9.45 p.m. and told him he’d better get to the hospital fast, things were getting worse. I knew he was on deadline (he was still working on the news desk at the Toronto Star) but there was something very, very wrong going on and I’m not very good at being alone with very wrong.

      (That night, by the way, was the last night of Paul’s long career as a newspaper editor. He left right after the phone call and never returned to The Star as the tragedy totally took over our lives. He was to not only grieve Mary’s tragedy, he would, for a very long time, miss the job he adored.)

      The CT was read almost immediately and the results came via yet another resident, who didn’t even introduce herself, and who stood in Mary’s darkened room and tersely admitted she knew nothing of the case.

    Yes, it was the shunt, she said. It was blocked, the ventricles were widened. She left. I wouldn’t have recognized the woman the next day if I’d tripped over her.

     Mary was sent from the floor to the critical care unit a few hours later where she would be more closely monitored. She would be moved to the second facility the next day.

      

                        Mary and Bob, 2011. She is still in hospital.     

      Five days. Five days where Mary was allowed to deteriorate to the point where she was hallucinating, disoriented, had double vision and couldn’t keep a crumb down.

      What, we asked ourselves, was happening to the baby? Mary, at this point, hadn’t eaten in about nine days. Would Mary ever be the same? Would she, as she predicted, die?

Next week: Short-lived relief

                                                      MARY ARCHER, AUGUST, 2008


     You would think when a life-changing tragedy strikes, you would want to talk about it right away, discuss it with everyone you meet, seek views, ideas, opinions and people who have had similar experiences. But our tragedy was so overwhelming, so unexpected, so life-altering and tragic and unnecessary that we grieved for months and years, grappled with the loss as best we could and became, without realizing it, a tighter, more rigid and isolated family unit, muddled in our horror - accepting sympathy, but only talking about the pain amongst ourselves. 
      It was too, too awful. So unfair. "It shouldn't have happened," we told ourselves. Why did it happen? Why wasn't someone there? Why wasn't she being monitored more frequently - or better still - constantly?" 
      Over and over, like a worn old record, we played it out again and again as the consequences unfolded.
      It still hurts. It still feels as fresh as the day it happened because the tragedy is still there, still with us. We see it every time we see our daughter Mary.

      We 'lost' the daughter we knew at 12.01 a.m. on April 9, 2009. I know the exact time because that's what was written in her medical files. We may have officially lost her many minutes earlier, but 12.01 a.m. was the time recorded for the Code Blue. That was when she was found on her side, "cyanotic," in complete respiratory failure, having vomited and aspirated: Those few minutes of struggling to breath, trying to clear her airway and being unable to left her with an anoxic brain injury. It changed her life forever. 

      To this day, I am haunted by that scene.
   
      Mary, 31,  was 24 weeks pregnant when her ventricular-peritoneal shunt became blocked and the pump stopped working. She endured two weeks of nausea, double vision, dizziness and disorientation. It likely became blocked due to the pregnancy and she had been seeing a high-risk obstetrician.
       The hospital that did the original VP shunt operation wouldn't deal with her due to the pregnancy as they had no obstetrics unit. Yet they kept her for five days as the symptoms  got so much worse. While we recognized the symptoms as being similar to those when she was first diagnosed with hydrocephalus, we just couldn't convince the various residents who examined her. She continued to deteriorate at a shocking rate. Not once was she seen by the neurosurgeon who did the original operation, just three years earlier. In fact, he sent a resident to her room to tell us he wanted her released from hospital, offering an appointment at his office in 10 days.
      
       To give her some due, the resident was so concerned about Mary's state she contacted a neurosurgeon she'd worked with at another hospital in Toronto, where they had an obstetrics unit. Mary was transferred, the shunt revision was done and it appeared to have gone well. Or so we were told.
      
      Our relief was to be brief. We visited her in her room following surgery and were pleased the blinding headaches and disorientation were gone. She was laughing again and happy, albeit still suffering double vision, feeling nauseous and tired.
      But some time later she got out of bed to go to the washroom, forgetting she had a catheter. She was alone in the room. She fell. We don't know how hard, but she did hit her head. Someone found her on the floor. We're not sure if it was a nurse or a personal support worker. It may have been a nurse as her room was the closest to the nurses' station.
     (We were never fully informed about what happened that night. We have only managed to piece together the events after trawling through her medical records. What we've never been able to figure out is - if a pregnant patient who has had brain surgery falls, hits her head and needs a CT, why would you leave her alone? Everyone knows hitting your head can cause nausea - let alone a patient who was already suffering nausea following brain surgery.)
       She was CT'd soon after this fall; soon enough afterward that any changes to the shunt or ventricles in the brain would not have shown on that scan. 
      (We were told by a nurse that the incident should never have happened, and that she knew Mary had been vomiting continuously.) 
       We know very little else, except that we got that phone call no parent ever wants sometime after 1 a.m. Something was very wrong, we were told .... 
        And nothing would ever be the same. 

      This tragedy wasn't Mary's fault; she wasn't drinking, she wasn't in a car accident, she hurt no one else. She was in a hospital, under the care of people who look after other people as a profession, by calling, by training. And yet......
     One year into her stay at the hospital - and after three attempts at rehab - a young male support worker, and possibly an inexperienced one, took Mary to the washroom during the night. Mary wouldn't have liked a man tending to her. This young man had been warned by another aide that Mary had to be constantly watched, yet he left her unbuckled on a commode chair while he left the room to find a diaper.
       Perhaps she wanted to close the door, perhaps she was mortified, we'll never know. But Mary fell off the commode chair hard, hitting her head - yet again - on the hard washroom floor. 
      We weren't informed about this fall until the next day and were told she'd had a CT. She seemed disoriented when we visited and even late in the afternoon and evening the results still weren't back. Finally at  midnight I called and was told Mary had a brain bleed and would need surgery.
       She had two craniotomies within 36 hours to drain the bleeds. The following week hospital officials held a meeting to apologize to us. 
        Their mortification seemed widespread. We were aghast. Absolutely bowled over. 
        We are uncertain of the long-term effect of those craniotomies but it certainly hasn't helped her condition. Where she was bright-eyed and more open before, she is now more closed and fights harder to make progress.


      Mary was in a hospital for three and a half years, until last fall. No one wanted her. No nursing home would take her. No rehab facility would take her. She had been sent three times from the hospital to a rehab centre in Toronto and three times came back to the hospital in an ambulance, direly ill with infections. While we tried to be with her as much as possible during those brief rehab stays, we couldn't always be there and she was left to sit in wet diapers, which brought on UTIs that rendered her almost unconscious. Infection is really tough on a brain-injured person.
      We actually paid an agency - the facility paid some toward the cost, too - for a PSW to spend part of the day with Mary and to help her get ready for bed. But still she became ill. 
      The only time she suffered from a bed sore? She got one at the rehab centre after we were angrily told she was leaning forward in the wheelchair and they were afraid she'd fall. Well, good point. We didn't want any more falls. But they put her in a chair where she had no choice but to sit back at an odd angle. The enormous sore at the base of her spine was an ugly thing, one more discomfort she didn't need. 
      With the exception of two nurses, the rehab staff were unhelpful. We witnessed an elderly man being fed one night, the nurse silently watching TV as she shovelled food into his mouth. 
      I came through the back entrance onto the floor one day only to hear a nurse shouting at Mary and berating her for trying to go into other patients' rooms. I was horrified. 
      I had to explain to this nurse - a trained professional who was caring for the disabled - that Mary had cortical blindness and didn't see well. She couldn't SEE the door to her room, fergawdsake.
      The third and last time Mary contracted a UTI at the rehab centre she was so ill her nurse practitioner told us it almost looked as though she was septic. She was so pale her skin was translucent. I sat with her and watched clots of blood drain through a catheter they'd inserted when she was re-admitted to hospital. 
      Three and a half years; the hospital pressured us to get her out, but nursing homes  feared she would hurt their seniors. Really? Mary has never in her life displayed signs of violence. One nursing home we visited that did consider taking her was filled with very elderly people with dementia. Mary would still need 24/7 care and they just couldn't provide that.
     Considering what goes on in Ontario nursing homes, as we now know, I'm glad she was turned down. But we were left with a real conundrum.  Her immediate care was beyond our ability. At that time she had a gastric feed tube, she needed lots of space and we all lived in apartments. There were countless medications to give during the day. 
      We did find a solution and today Mary's lives in a small apartment with caregivers 24-7. Her partner and daughter visit daily. The place is strewn with toys, walls plastered with her daughter's artwork.
       But it's a tough slog for everyone. We are there almost every day, shopping needs to be done, doctor's appointments, therapy, visits to a program at West Park, which has been wonderful. Mary pays her own rent and utilities from her pensions. 
      

        This blog is a mother's story; a story of hope, failure, fear, some faith (not much now), a great deal of love and of the ties that bind a family.
        It comes four years late because until now I have not been able to fully deal with what has happened. I don't know that I can deal with it even now, but I can write about it. 
        It is not intended to incite fear - although I urge anyone with a loved one in any hospital to STAY with them as much as possible - but to show a journey that is incomplete yet filled with love and strength. It is meant to show the power of the human spirit - Mary's - and her determination to stay alive for her daughter and her partner, Bob. It is meant to show how family - in our case, the extended family of siblings and cousins - can hold you together,  give you strength and keep you going. It illustrates what friendship really means; being there even when we knew those friends, Mary's and ours, couldn't stand the pain or loss.
       This blog is simply meant to inspire, to tell the story of one person's journey and survival.

heathermacarcher@rocketmail.com

                                                      MARY IN THE SPRING OF 2012


Next: The devastating prognosis