Bonnie’s major blood loss on April 1, 2008

I mentioned yesterday that
reading about the Silverwood family sitting on the coral reef with
the father dying from blood loss because his leg has been mostly
amputated by a falling mast reminded me of the afternoon I sat
with Bonnie while
she was bleeding from her gastrointestinal tract and getting
transfusions so she wouldn’t die. The
timeline says this
was April 1, 2008, a couple of weeks after we were officially told
to assume that she wouldn’t recover, and a month and a half before
she actually died.

I was driving to a physical therapy appointment, planning to go
on from there to visit Bonnie a the rehab hospital in Salem. I
don’t believe in doing phone calls while I’m driving, and
certainly not the kind of phone calls where doctors are explaining complicated
procedures to you and asking you to make treatment decisions. The
part of Cambridge and Somerville I was in has pretty busy traffic,
but you can sometimes find a parking place to pull over into. So
with these several calls, I was sometimes able to pull over and
answer the phone, and other times I had to attempt to call the
busy doctors back and deal with the switchboard trying to find
them. (This is in a parking space, but with a lot of truck traffic
going by.)

So the first phone call said that she was bleeding heavily and
they wanted my permission to do a transfusion. So I said OK.

But then the questions got harder — did I want them to do an
endoscopy? Did I want the blood thinning medications stopped? (I
was surprised they were still doing blood thinning medications.)
Could I give permission to move her from the rehab hospital to the
Lahey clinic? I said I’d be there in about an hour, and we could
talk about it better then.

When I got to Bonnie’s room, it was bustling. Normally there
were the two hospital beds with patients in them, and the noises
the machines made that were breathing for the patients, and an
occasional visitor or nurse speaking quietly. But this time
they’d cleared a fairly large area around Bonnie’s bed, and there
were several people standing around doing things. Eventually I
sorted it out that there was a special nurse keeping an eye on
Bonnie because she was critical, and the people actually doing the
transfusion.

They were telling Bonnie she shouldn’t go to sleep. She was
conscious, and writing fairly clearly — one thing I remember
vividly was that she wrote “Will I die?” We asked her whether she
wanted the endoscopy. I think the way they put it was, “Do you
want to go to the Operating Room again?” She said, “Yes.”

At this point the decision had been made to stabilize her as
well as they could with the transfusions and then move her to the
Lahey Clinic, which was better set up to deal with patients like
her, and the endoscopy would be there if there was one. So I
stayed around to keep her awake until the ambulance people
came to “pack” her. (That is the word they use.)

I had left hymnals in her closet, and one of the things I
carried in the bag I brought when I visited her was Rise
up singing
. So I started with the lullaby section in that,
but then moved on to the other sections. I must have sung
several things I probably hadn’t sung since high school. One of
the nurses sang along. When I started having trouble singing
because I was crying, a nurse would come hug me. The special
nurse who was staying there was afraid of Sunny (one of the good
things about this rehab hospital was that they were tolerant of
well-behaved pets visiting the patients), so I kept him leashed on
the other side of the bed from her. He was unusually good about
getting out of the way of the people working on the transfusions.

It was a couple of hours later that the EMT’s came to put her
in the ambulance. By then, I think she wasn’t as cold from the
blood loss and the transfusion process. For reasons which are
completely obscure to me, I let them talk me into taking all her
stuff, which took up most of the available space in my car.
(There were things like the walker with the seat which she wasn’t
ever going to use again, and a giant teddy bear someone had given
her.)

I had a recorder lesson that evening, and it was interrupted by
calls from the emergency room at the Lahey Clinic. Some of what
they wanted to know was why she was on medications I’d never heard
of. They wanted to know how she was “coded”, which meant nothing
to me, but then they explained that she was “Do Not Resuscitate”,
which we had agreed to verbally, but I’d never signed anything.
(I’ve talked to people who believe that doesn’t happen.) The
doctor I spoke to told me that it was unclear whether she’d make
it through the night.

Of course, when I called the following morning, I wasn’t able
to get any information about her status because the nurse didn’t
have a “code” for her. (Different code — a password you can set
up when you’re there so they know you’re someone they can talk
to when you call.)

Eventually, they did do the endoscopy, and found no problems in
the part of the colon they were able to access. There was a
section that was so squeezed in by the cancer that they couldn’t
get to it to see it. But it looked like all the bleeding must
have been caused by the blood thinners, not by actual ulcers.

It was shortly after this that the doctors started discussing
hospice care with us. One of the things they emphasized was that
if she were in a hospice, she wouldn’t get the transfusions if she
started bleeding again. But they also wouldn’t be giving her IV
medication like the blood thinners, so in fact, she never did
bleed seriously again.

If I had it to do over again, I think I’d be more pro-active
about making sure I knew what medications were being given and
why.

I actually think it would have been better to die of the blood
clots earlier in the process than the way she actually died, but I
given all the decisions she made both before and after the stroke,
I can’t say I believe she agreed with me, so I really couldn’t
have made a different decision about the blood transfusion and the
endoscopy.

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