I was determined to stay at the hospital tonight until Mark had a CAT scan and I talked to the resident. When I was still there by 1am they decided to talk to me so I'd go away. Do you believe that all the residents had a rotation yesterday and there is a whole new team of doctors there who have never seen Mark before? A great way to evaluate him against his prior status! We know their chart documentation processes leave a lot to be desired.
We need to go back to last night. After his bath, Mark was chilly. His feet were very cold and he was tapping them even more than usual. He does this to help his circulation, something he's done since I've known him. I rubbed his feet to warm them up (they stopped their movements for a short time) and I even put some fuzzy socks on him. They only had a very light weight cotton blanket and it was freezing in his room. And if I'm cold with my hot flashes, you know it's cold! Even the nurse said the room was cold. He was tapping more vigerously than usual.
For most of the last five weeks, Mark's head is turned to the right and he gazes to the right. I'm sure you can tell this from the hospital pictures that are posted in the link on the front page. There are times, usually at night when his eyes look straight ahead and his head is also straight and he seems to be able to focus better. This doesn't happen that often, but it is improving slowly.
The doctors at the Rehab center thought he was having seizure activity due to the foot tapping and his right looking gaze. Even the resident tonight suspected those two things could be caused by seizures. I asked the resident if it were seizure activity, would the foot tapping stop if I rubbed his feet? He said definately not! For those of you who have seem him in the hospital, I'm sure you remember the foot tapping - at times even his lower leg was swinging off the bed.
His CAT scan showed no changes. What we were most afraid of was another bleed, but there was no evidence of this. And I guess the shunt looked okay too.
Mark was still hooked up the the EEG machine when I left, hopefully this will be read sometime tonight.
But Mark also didn't want to wake up today which was a great concern to the Rehab staff. But do they know he's only been awake for extended periods of time since last Friday? And after all his activity yesterday with the ride to rehab and the shower, maybe he was just tired? He did wake and respond on the ambulance ride tonight from the rehab to the hospital, and again for the resident when he arrived at Jefferson.
I hope I can say " I TOLD YOU SO!!!" tomorrow.
I will keep you posted.
P.S. I received my lovely Angioma Alliance pin today from Mark's angel Connie with a lovely note. I hope you gets yours soon. http://www.angiomaalliance.org/donate.html
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6 comments:
I would think that the move, shower, etc. was a bombardment of sensory stimulation unimaginable to us.
The most maddening thing about Hospitals is the lack of coordination from department to department, and many times even shift to shift. Then compound this with Hospital to Rehab, and I will tell you from my father’s experience there is NO coordination, just paperwork and documents to read. If the Hospital/Rehab staff is as busy as I am at work, who has time to read.
So a new National Lobby / Non-Profit needs to be formed by ALL ex-hospital patience, something like HPAG, Hospital Patience Advocacy Group. This group would bring to light all the unnecessary suffering and even deaths caused by this lack of communication and coordination in Hospitals. Mark will design the logo and all stationary and possibly take the helm. Now who in?
My amateur analysis suggests "check his dilantin dosage".
If they suspected "seizure activity" PERHAPS they increased the dosage.
I have personally witnessed with a relative the near catatonic state which dilantin can induce.
Susan in Olympia
P.S. Chris, you have honorary family status if you want it! Bless you.
Hey Mark (and Chris),
Sorry I haven't been around for the last few days, but been sick in bed.
Tina tells me she's visited you a couple times--she and I are both really pulling hard for you (both). She's been sort of my eyes beings that I am many states away, and says she notices the improvement. Wow, that's good to hear.
I hope she delivered my greeting to you--wish I could drop in myself. We're both hoping you are up to coming to the nationals in a few months--I especially want to see your reaction to the stupid T-shirts we're supposed to wear for that occasion. Yuk!
Keep on making that progress!
"Spensah"
I'm a little late, but I want to wish you both a happy new year, out of the hospital and back to life. Mark, we're so glad to hear that you've made it to rehab.
Bless you both
Celeste and David
Your experience reminds me of a study that was done years ago. Students checked themselves into mental wards as patients in order to study the patients and the care they received. They wrote notes. A lot of notes. The act of their continuous writing was seen as proof of their psychosis by the doctors. Go figure.
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