Robert has declined so quickly this year and had so many
different things going on, my head has been spinning. I just want to find out what’s wrong!
.JPG) |
| Looks like Robert's appetite is back! |
Questions have swirled this year: Why is he getting
pneumonia so frequently? Do we use antibiotics when he has bronchitis and risk
resistance to them or risk the bronchitis turning into pneumonia? (Side
question: Why aren’t there any good choices?) Why does he now sometimes have
both urinary and bowel incontinence? Do
we blame the antibiotics or is there something more going on? What’s with the increased seizures? The
irritability? The trouble walking? The sleeping 18 hours a day? The eating half of what he used to?
We got a possible diagnosis of Cervical Disc Disease with
Myelopathy at the last neurology appointment.
Boy, that
didn’t sound good. The neurologist
needed an MRI to confirm what he suspected but Robert couldn’t tolerate the
MRI. They decided to do an MRI with
anesthesia and wrote a referral for that.
Just a few short days after that, Robert was literally unable
to move his legs. Richard (yes, my
husband with the severe and chronic back pain) had to lift Robert from his
wheelchair to the bed. The day after that, Robert slept and slept and slept.
Neurology suggested we take him to the ER and get a CT scan
done and then the hospital could do the MRI with anesthesia. It was a Tuesday
afternoon. How bad could the ER be?
Oh how naïve I am!
It was a very long
day.
Almost as soon as Robert was settled in his hospital room he
started throwing up and running a fever off and on. What in the world?! Day Program informed me the following day that
other consumers had been throwing up lately. Great. Robert has a stomach virus
on top of everything else.
And, it’s contagious. Thank
you very much.
After several days of waiting for the MRI with anesthesia
(we had to wait for the stomach virus to subside, then there was the 4th
of July and then a weekend and then a promise of “maybe we’ll do it Monday but
for sure Tuesday”).
By late afternoon Tuesday, the neurologist was not hopeful
and was as frustrated as the rest of us.
For whatever reason, the hospital does not actually schedule MRIs with
anesthesia for people actually admitted to the hospital. They “squeeze” them in between emergencies
and the general public appointments (as in, if I had taken Robert home and then
made him an appointment, he probably would have gotten it a lot faster).
The neurologist did what she could and called hospital
administrators (the hospital neurologist is not his usual
neurologist). They pulled some strings
and we were on our way to the basement of the hospital housing the MRI machine.
It was miles away from his room and I did my best to keep up
with the transport team pushing the gurney but I wasn’t about to complain. We were getting this done and we will be able
to actually find out what is wrong!! Woohoo!!
Until I hear the word “cancelled” on the mikes hanging around
the necks of the transport team and they stop cold.
Oh hell no.
We were no more than ten feet from the door leading to the
MRI. This test we have endlessly waited
for. A voice from the room said, “He has
hardware in him still.”
NO HE DOESN’T!
I made my way around the transport people and past the
gurney into the MRI room. Mr.
Radiologist, MRI technician and the transport people looked as if they just
might call security.
He does not have hardware in him. The VNS
and DBS have
been removed. I was assured by the
neurology team at his former hospital – he can have an MRI.
GET HIM IN THERE!
Mr. Radiologist towered over me but respectfully talked to
me, even while I ranted and raved and told him he was flat out wrong.
He insisted there was a piece of the VNS still wrapped
around the vagus nerve and that Robert’s nerve could be burned if he had the
MRI.
But he’s had an MRI since the equipment was removed! We’ve
waited for a freaking week for this test!
This is ridiculous!
All Mr. Radiologist could do was say how sorry he was. He was not backing down. The transport team
was already leaving with Robert, walking back to the room and I just threw up
my hands and stormed back right behind them.
As soon as we got to the floor, I looked at the nurse – who was
as surprised and disappointed to see us as I was to return – and said, “Call
neurology!”
One of the neurologists from Robert’s team showed up within
minutes. She was mortified and apologetic and by this time, I was in tears. A
moment later, Mr. Radiologist peeked into the room and I dropped my head into
my hands.
I’m sorry I lost it but we need to find out what’s
wrong. We’ve been waiting for a week for
this test! I just can’t take this!
He was very sympathetic but again explained how dangerous it
would be for Robert to have the MRI. I
told him I understood and appreciated him coming to the room to further explain
his position.
I get it. I do. I just want answers.
The lead neurologist on the team came in a short while later
and apologized profusely. She missed the hardware on the CT scan. She should
have seen it and didn’t. She was kicking
herself and felt absolutely horrible. She assured me the entire team would
learn from this which really was of no comfort to me at that point.
What’s next?
She had a plan and for that, I was grateful.
She decided the next best test would be a CT
scan with myelogram.
Will this get us a diagnosis? When can we get this? Can this happen tomorrow? It’s already Tuesday night – we have been
here a week and Robert is losing function by the minute.
Please!
According to the neurologist, there were two options: Cervical
Disc Disease with Myelopathy or Cumulative Traumatic Encephalopathy.
The CT scan would be able to confirm or rule out the Cervical Disc Disease.
She made it happen and the next morning preparations were
made for the CT scan. By noon we were
done and after waiting an hour for transport (perhaps the story of the lunatic
sister was making the rounds and they were drawing straws for the job), we were
back in the room waiting for the diagnosis.
The results were that there was some narrowing of the spinal
column in the C5/C6 area but there was enough space left that they were
comfortable ruling out Cervical Disc Disease.
The neurologist said she thinks all of Robert’s symptoms and
decline are a result of Cumulative Traumatic Encephalopathy. Since all I had was time at the hospital, I
had done research on this so asked if it was CTE or CTEM.
CTEM?
I didn’t really mean to play “stump the neurologist.”
The resident on the team went to the computer to look it up:
Cumulative
Traumatic Encephameylopathy.
The neurologist confirmed it was CTEM, the slightly more aggressive
and serious cousin of CTE.
This is not something that can be fixed and it is extremely
serious and progressive (sort of like ALS, aka Lou Gehrig’s disease).
But it is a diagnosis and I find great comfort in knowing
what we are dealing with. While we can’t
predict exactly how this will progress in Robert, it makes sense. His lung muscles are getting weaker, he has a
swallow disorder and his leg muscles are unable to get moving. His brain is
forgetting to tell his muscles to work.
For me, not knowing what is going on or what to expect is
worse than knowing.
For me, there is comfort in a diagnosis.
For Robert, he knows he is going to get physical therapy for
a few weeks at a Skilled Nursing Facility. He knows he is getting meals served
to him and he’s looking forward to the activities at the SNF.
That’s all the comfort he needs for now.
.JPG)