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Feeding
Posted 4/14/09
Today Charlie is getting his Nasogastric feeding
tube removed and replaced for the time being with a gastric feeding
tube which goes in through the belly directly into the stomach. This
will be a hell of a lot more comfortable for him and clear up his nose
and throat so he can start really working on talking again, and
possibly soon he might be able to start eating and drinking. It'll take
a while to get there, but for now at the very least he won't have the
discomfort that a nose tube can bring, and we don't have to worry about
him trying to pull it out.
He goes in for this proceedure this afternoon, and he'll be on a local
anesthetic, so we don't have to worry about the bad reactions he
sometimes has from some of the heavier stuff.
If you're interested there's a good online book on the subject at Geriatric
Anesthesia
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Things Change
Posted 4/11/09 4AM
It's been really tough to come home and write updates.
Some of you already know the good news, Charlie opened his eyes on
Wednesday, which is phenomenal. Since then he's made pretty good
progress.
They actually took out the big tubes for the respirator and feeding,
and now he only has a small nose tube supplying nutrients. He
definitely recognized me tonight, and we watched the Red Sox game. He
can't talk much, but he can say simple things like "huh", and "yeah",
and even can say his name, though he has trouble clearly pronouncing
"Madison". But that's without his teeth. His left hand is not much
stronger, but he does seem to have slightly better control.
A couple of times before he fell asleep he yawned, those big yawns he
often does with a bit of voice and nodding his head back.
All of this is good. But I have to weigh my enthusiasm about these
things against the likelihood that this may be as good as it gets, or
indeed that this progress may well reverse.
We've been cautioned about that. But I'm trying to keep my hopes high.
I don't know when I'll be updating you next, I'm running flat out while
trying to make sure I eat, sleep when I can, and find(or rather steal)
moments to just do nothing. I know I'm really pushing myself, but
knowing I have people close to me who love me and have offered support
in vital areas such as info on SNF's
and insights about how to cope in general is a great help.
Something that I'm not posting on the MGH page, but that is REALLY
hanging heavy on me is that last Saturday, a very dear friend, Lesley
Chapman who was also my "boss" and partner all those years with
The Theatre Cooperative, was rushed to the hospital where for
several days she was closely monitored. She never awoke.
930PM April1st
Everyone has been sent home. Tonight before Dave
left Charlie had been switched to hourly neuro exams, these consist
mainly of testing to see if his pupils react to light, calling his name
and asking him yes or no questions, eg "If you can hear me open your
eyes" and pain stimulus. There hasn't been any serious response yet,
however his left arm still reacts to pinching, and He did open his
right eye suddenly then closed it. Also he did have a bit of fever
which is down now.
They're keeping him on Fentanyl for pain at this time.
Not much else to tell, hopefully we'll have something good tomorrow.
10AM April 1st
Not much change. Charlie has been taken off the Propofol, and he'll
be getting daily CT scans
to try and get a sense of his progress. He's still unconscious for the
time being.
David's on his way to MGH for another long day, and I'll be home this
morning trying to get a handle on mundane things like bills and
laundry. We're all pretty worn, but still going. Dave has postponed his
knee surgery so he can be mobile for now, but he's coping with a really
painful knee. I expect to join him in the PM.
About Visiting
They're really not allowing any visitors right now. The Neuro ICU is
small and the hospital staff have to keep visitors for all of the
patients to a bare minimum. We understand that there are close friends
and family who feel an urgent need to see Charlie, believe me I know
how you feel, but the extra presence, even if you are very quiet and
well meaning can be disruptive and can be a matter of life or death to
someone. Just yesterday they lost a patient who had literally scores of
family members in shifts and just the added traffic was a problem. The
Neuro ICU has 18 patients all in extremely serious condition, all with
loved ones who are in the same boat as all of us, and the staff
literally can't spare a second to inform callers or coordinate traffic.
They are also legally bound to speak only to David and me, and they are
very serious about that. So please for the time being, just check this
page for further updates, or call me if you're feeling out of the loop
and need to hear rather than read.
That small bit of restraint can make a real difference.
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This might take some time
9PM March 31
Not much change at this point. It's looking like Charlie's right arm is
still unresponsive. That's not a good sign. The clotting is still not
fully cleared, and it's pretty deep inside the brain. The TPA is
working, but it's slow going, and I'm told that this could go on for a
long time, we're talking weeks or months.
So one of the things I'm charged with doing is to research long term
care options. So if any of you clever people have any experience in
this area go ahead and chime in.
On the other hand, I'm also told he may wake up in a week and be
relatively functional. In other words, Nobody knows really.
Dave's got to get back to NH by tonight, so it looks like I'll be at
MGH soon, so I won't be able to post updates until I get home.
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Go Home Everybody...
Midnight March 31
This is what they say when they've tried a new treatment but it's too
early to know if it's working, and too late for us to be up. Dave and
Suzi kept watch all day and they were sent home to get some proper rest.
Dave's hurting pretty good himself, he has knee surgery in two days,
too bad it's not scheduled to happen at MGH, wouldn't that be
convenient?
The new treatment mentioned is to use TPA to clear away clotting while
Dad's brain heals. They are waiting to see improvement in the
situation, but as of this post Charlie still appears to have trouble
with the right side, specifically his hand and leg. For more
information, see TPA at Wikipedia,
http://en.wikipedia.org/wiki/Tissue_plasminogen_activator
as well as
http://www.sciam.com/article.cfm?id=widening-the-window
more tomorrow.......
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General Info
Between 2:00 and 2:30AM Sunday March 29, Charlie was on his way to bed
and fell on the stairs. He was unconscious but breathing when
paramedics were called in. He regained consciousness by the time help
arrived and taken to Lawrence Memorial Hospital in Medford where it was
found the he had some cranial bleeding, and a dislocated left shoulder.
He was transported to Massachusetts General Hospital a short time
later, where numerous tests showed that he also had two broken ribs and
at first no further cranial bleeding,was mostly lucid but still very
uncomfortable and slightly nauseated.
After several hours in the ER where he was carefully monitored, he was
moved to his room in the Ellison/Blake building, where at first he
seemed dazed but otherwise stable and was resting comfortably.
After a short time he awoke and was much more nauseated. Further tests
showed pressure to the brain, and surgery was performed to relieve the
pressure. Charlie was moved to Blake ICU, where as of 2PM March 30,
pressure is still being stabilized under close supervision.
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