March 14th 2016
I got a call at 12:22 pm to say my dad had not shown up to work (very
unlike him) when he was due in around 7am. I raced into the car and
begin speeding 70mph down residential roads on the trek to his house 20
miles away.
While driving I had called nearby family members that could get
there faster with the instructions to just call 911 if his van was still
at home, as clearly something would be wrong, and not to tell me
anything further until I got there - I was already a panicked tearful
mess.
My dad had a history (as does most of our family) of strokes. 5 and 6
years prior he had two very minor strokes that left him with no deficits
and less than a week hospital stay each.
When I got there, the paramedics and fire were already there working on
him. He was alive, but basically unconscious. After searching the home
to rule out drug overdose (I guess they have too) and ruling out carbon
monoxide, he was transported to the nearest hospital. While being lifted
on the stretcher he was able to mumble a few words to me "I don't know
what this is".
The ER ran a battery of tests for infection as well as CTs for stroke,
everything was negative, for a while we all including the doctors sat
there puzzled. It wasn't until MRIs finally came back that it was
discovered there was a lesion in both side of his thalamus and brain
stem, however, they still didn't believe it was a stroke. He
presentation wasn't "typical". They started treating him for everything
under the sun, at one point he was on 6 different high powered
antibiotics.
He was transferred to the ICU and that night, intubated because he
stopped being able to swallow his own saliva and they feared he would
aspirate. He was on "life support" for 3 days. At the moment, the
diagnosis was stroke, with no known cause. It was 2 full days before we
ever actually talked to a neurologist for an official diagnosis.
Her words were, when I walked in the room what I saw was a lot better
than I expected looking at his brain scans. We came to learn the
thalamus is a pretty important part of your brain, and to have both
sides now essentially dead, they expected him to be in a permanent coma.
As far as I was concerned, he was.
He responded to physical stimuli on both sides. He did not respond to
voice commands except for occasionally on his left side. His eyes were
both non reactive and one pupil was incredibly large than the other. He
slept for what seemed like forever, in reality I believe it was about 3
full days.
On day 1 I had already made the decision that I wanted him transferred
to a different hospital where all of his doctors were, this wouldn't
actually happen until day 5 due to red tape and stupid insurance. In the
meantime, he was taken off the ventilator day 3 or 4, and gotten out of
bed to sit slumped over, but awake and alive. I was actually out of the
room when they got him up, it was quite shocking to see him in the
chair, I cried. When I went over his first words to me were, "Are you
going to take care of both of us" - At this point I thought, he's going
to be fine.
My aunt has dementia, it started around 2013 and quickly went down hill.
She is significantly older than her siblings (a child of a previous
marriage) and was more like a mom/grandma to them and I, and my dad
being the fix everything and everyone person he is insisted we keep her
home instead of in nursing care. Over the course of her disease I had
taken over a lot of the responsibilities caring for her, grocery
shopping, meal prep, coordinating her medical care, etc. This is, what I
assume, he was referring to when he asked if I could take care of both
of them.
This glimmer of hope that he was going to be okay and had all his marble
intact, would be the last. He was soon transferred to my hospital of
choice where 10,000 more tests were done, and bi-lateral thalamic stroke
remained the diagnosis. What came in the days, weeks, and months
following is more than I could've ever managed, and what lead me to
start this blog.
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