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 19th – 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
