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
