The Very Bad and Sad Truth

       April 9, 12.01 a.m. was the day we officially lost our girl, or at least the best part of her - that brain that learned so quickly, that moved like lightning, that was so wise, educated, compassionate, understanding and funny.

    We discovered the truth: Say what you will about having a kind heart, a good heart, a big heart - the heart just doesn’t hold the soul, the brain does. Even the ancient Celts knew that.

      Our daughter Mary was moved to a second downtown Toronto hospital after finally being diagnosed with a failed VP shunt and pump. Her ventricles were full of fluid, accounting for the extreme nausea, hallucinations and disorientation.      

     By the time they got around to moving her via ambulance it was almost 11 p.m. and we all trooped into the busy ER together, past the drunks and homeless, Mary babbling away, eyes closed due to the double vision, and making little sense.

      One of her friends was an ER nurse and he was on duty that night and with her through the admission, which took all night.

     The operation, we were told, would take place as soon as possible, which was about 1 p.m. the next day. The surgeon who took on Mary’s case was there throughout the surgery, but it was in fact done by what we came to know as an R2, a second-year resident. He looked about 12, I thought, as he explained to us how it had gone. Shunts “are tricky,” “a pain in the butt,” he said, and Mary’s operation was a little complicated as the original shunt had actually adhered to the brain. (The shunt is inserted through several layers of the brain.) 

    But she came through it and she and the baby were fine. (A sigh of relief here.)

    So everyone was safe, we were weak with relief and now could sleep and eat for the first time in days. That was the early evening of April 8. We left for home, all of us exhausted over the horrific experience we’d had with the health system, trying to get a diagnosis and treatment, trying to get Mary better, trying to make sure her baby would be okay, too.

                  

               A smiling and relieved Mary, early evening April 8, 2009 after 

                 VP shunt revision surgery to relieve her severe symptoms.

      But there’d be no happy ending to this story. Our relief was brief. We were about to journey to another country – one for which no passport is required. There are no maps, no resting places, the road is rocky and the ride is rough beyond belief. You want to stay away from this place. It’s a war-zone.

     As we were getting ready for bed, I was overwhelmed with an urgency to call the nursing station to see how Mary was faring. We know she’d called her best friend, Heather, in Lindsay, because Mary had phoned me on my cellphone as we drove home and asked me to call Heather in Lindsay and have her call her.  It was impossible for Mary to make a long distance call from the hospital room.

    “She really must be feeling better,” I said happily to Paul as I rang Heather.

    A social worker as well, Heather was the last person Mary really talked to.

    

     I’m persistent when something sticks in my head. I keep at it and at it. (My Scottish mother called it the ‘second sight.’ She always said she had it, that I had it. But I prefer to call it a mother’s intuition.) And so I kept telling Paul we had to call the hospital and Paul, exhausted, kept saying, “Stop worrying, she’s fine. Of course she’s fine.”

      “No, we have to call. I’ll call. We have to call.” I was insistent and so he dialed and asked ….

         I was standing on the other side of the bed listening to the one-sided conversation:

        “But she’s fine? ….You’re sure she’s fine. You’re positive she’s fine.” A kind of reluctance on Paul’s part followed. “All right. If you’re sure ….

        “What happened?” I hiss. A shake of the head from Paul.

         “All right, as long as you’re sure everything’s okay.”

        I can hear the nurse’s voice coming through the line, sounding exasperated. “Yes, she’s fine.” She repeated this several times. That’s what I remember the most. “She’s fine.”

     “She fell,” Paul said when he hung up. “She forgot she had the catheter, got out of bed to go to the washroom and she fell and hit her head.”

      “WHAT?”

       “But they did a CT right away and the nurse said she’s okay, back in bed and resting.”

       “Oh my God. The baby?”

       "Someone from OB came and checked. The baby is fine."

        What we didn’t know then, but know now: That early CT so soon after a fall … any buildup of fluid would not likely be detected. CTs tell some, but not all of the story, as we were to discover. That buildup of fluid happens more gradually.

       I can’t imagine falling on a floor hours after any kind of surgery. You’re disoriented, tired, in pain and confused.

      We don’t understand why – if they were short-staffed and didn’t have a spot in ICU or a step-down room – they simply didn’t put her in front of the nursing station and keep an eye on her. It’s seems to be an option during busy times. We’ve wended our way through beds and trauma chairs placed near the nurses’ station during busy times.

      Hospitals are great places when things go well. They boast about their successes. Mistakes? Oddly enough, not so much.

      Everyone involved in a mistake clams up and no one will give you a straight answer. The legal side of things takes over and a hard game begins, even as the family and patient tries to rebuild, move on, solve problems.

  

       Another interesting fact which we think affected Mary’s care, (it will make you want to take the bed next to your spouse, child, father, mother or whoever), nurses are only bound to check on a patient every four hours.

       Since this incident with Mary, we’ve felt that someone, somewhere ought to look into this protocol.

       On the floor where Mary was that night – where trauma and neuro patients are treated – are patients who have had brain tumours removed, strokes, brain hemorrhages and trauma to the head as a result of accidents involving cars, motor bikes, riding horses and roofs (falling from them).

        Patients who have had injuries or trauma to their brains are confused, say inappropriate things, wander, lash out, argue and always, always want to go home. I couldn’t tell you the number of patients we saw high-tail it off that floor, backsides hanging out of their gowns as they tried to escape – anywhere but there.

      I can’t say I blamed them.

        

       That night – after Paul made the phone call - we never did get to sleep, despite our sheer fatigue. We read for a while, uneasily, talking about what had occurred. And I remember thinking, okay, Mary's room is just about 10 to 15 feet from the nurses’ station, they’ll check on her, keep a close watch … she’ll be fine, she’s the only patient in the room. They’ll take good care of her, she’s fine, just as the nurse said. It was, after all, a hospital Paul’s entire family turned to time and again for care. My mother-in-law had six caesarian sections there. It was trusted.

       Then the phone rang at 1 a.m and it was Bob, Mary's partner. He was hysterical. Something had happened and the young resident had called and wanted us all there right away.

       Mary, when we got to the hospital around 2 a.m., was in medical ICU, several floors down from her room. There wasn’t space in the trauma-neuro ICU – located just down the hall from where she’d fallen several hours earlier.

      The waiting room outside the unit was dark, a couple of young women residents were talking about the incident in hushed tones and one turned and said she’d heard about it. (This young woman, a resident anesthetist, would later take on that job when Mary’s baby was delivered. She was one of the nice ones.)

     As she spoke to us, an elevator door flew open and Mary’s nurse friend, who was again on duty that night in ER, came running out. “She’s breathing above the machine,” he told us in an effort to calm us.

      “How do you know?” we asked.

      “We heard earlier down in ER that a pregnant woman had fallen on the floor and I asked if it was Mary Archer,” he said.  

      Bad news travels fast in a hospital among staff. Or was it because they knew it was avoidable bad news and that they were in the wrong? Shouldn’t someone have been watching that vulnerable patient? Who knows? But everywhere we went in that institution, people seemed to know about it.

       We were taken into the ICU unit. It was dark there, too, and all I could see was a long row of extremely ill people. Machines hissed and people breathed that strange sound made when technology takes over the business of living for humans.

        I hardly recognized Mary. She was on life support, a tube taped to her face, which was bloated and seemed bruised and blue. She was deeply unconscious, the VP shunt now strung across a green dressing on her forehead. Her lungs were rattling and making a dreadful noise.

      “What have you done to her?” I screamed at a nurse who was fiddling with one of a dozen lines.

    She was a kind woman. (I met her many weeks later in the trauma-neuro ICU.) She said nothing. I felt horrible. I don’t usually yell. Another nurse appeared and said they had to get a picc line in (a peripherally inserted central catheter, which is placed near the heart to administer meds) and we all had to leave. They were still working at a frantic pace on Mary.

     The R2 appeared, looking pale and slightly fearful. He told us she’d vomited and aspirated, that she’d suffered respiratory failure, that they’d found a dark, viscous fluid in her lungs. It would take time for the lungs to clear. He’d taken the shunt out and it was now external for the time being – the thing I’d seen on the green dressing.

       

Mary, day 3 in ICU and on life support. A nurse

told us it would be okay to take photos so we would have something

 to show Mary's child when she got older "so she knows

what her mom went through."

      Much, much later – three years later, when we sought independent opinions on what had occurred that night, one doctor who looked through Mary’s files  – an eminent man – said he believed Mary had been bleeding through the larynx and into her throat after that fall and that the viscous fluid in her lungs was blood. Was this bleeding going on post surgery, too? We’ll never know for sure. We were told very little. Did it occur as a result of the fall? We’ll never know that, either.

    In fact, there is remarkably little written down in Mary’s file about that night. The nurse did not sit down and write up the incident in the patient file after the code blue was called, Mary revived and and moved to ICU. And if notes were made, if that nurse did in fact write down anything about what occurred – well, there sure as hell aren’t any notes there now. And God knows, we’ve tried to find them.

     There are many other notes from after the event, pages and pages in two huge boxes that takes a dolly to move them. When we sought an incident report in the ombud's office – something not usually seen or handed out casually (we had to  make an appointment), the individual we met told us when an event like Mary’s occurs on the floor, it is common for very little to be recorded.

    What a good idea! Then you never have to account for what happened.

    But this doctor’s opinion of the bleeding through the larynx – from a man whose name you’d recognize in a flash and who I personally believe to be accurate – sent a chill through me. I shook for hours after hearing it.

     That first night in the medical ICU unit, before they found a space for Mary in the trauma-neuro ICU upstairs, the R2 (second year resident) was uneasy with us, nervous and abrupt. He said he didn’t really know how long Mary was without oxygen, didn't seem to know much, actually.

    

      But we’d have this discussion again.

      My last question as he eased himself out the door of the unit, backing away: “Will Mary ever be our Mary?”

      His reply: “Time will tell.”

Next week: Another world