Had to take dad in to the neuro unit at our hospital yesterday. his slow, slow, slow taper off of the low dose dexamethasone from 2 mg, to 2 and 1 mg every other day, to 1 mg/ day over several weeks appears to have resulted in some bonus brain edema around one of his larger brain tumors. His Radio Onc who usually looks at this was out of town, and so was the Neurosurgeon who we have seen once recently (about an upcoming crainial needle biopsy to determine BRAF status), so the report got jumbled like in that game "telephone."
Had to take dad in to the neuro unit at our hospital yesterday. his slow, slow, slow taper off of the low dose dexamethasone from 2 mg, to 2 and 1 mg every other day, to 1 mg/ day over several weeks appears to have resulted in some bonus brain edema around one of his larger brain tumors. His Radio Onc who usually looks at this was out of town, and so was the Neurosurgeon who we have seen once recently (about an upcoming crainial needle biopsy to determine BRAF status), so the report got jumbled like in that game "telephone."
So anyway, I had initially called his medical onco's nurse to report the increased confusion/ less stable walking/ nearly falling several times. That had mostly happened on Monday evening (though later he told me and the nurse it had happened Saturday, which was news to me). Was a lot better balance wise Tuesday AM, but not back to his baseline and still confusing some little things. Not enough to be alarming, but I thought I should report it since we had to swap his quap can for the old walker.
By the time the triage report got from hematology to radiology to neurology, etc, apparently the story got exaggerated. The nurse called and said, go straight to admissions, we need to do an MRI and skip the ER, the dr subbing for your nero will meet you there. Go now. The nurse on the phone was so sweet, but I was caught off guard and didn't ask wy we were admitting him if he just needs to do an MRI and get back up on the steroid – I mean, I understood they probably want to observe him if the suspect bleeding or other sweeling issues in the brain. So I got him settled into the room, etc, the on call dr makes his orders, and then the admitting neuro's resident dr comes in and says, well, you don't look as bad as the picture painted for us. Come to find out, they heard he'd gotten completely immobile, in a wheelchair, and whatnot. He still needed to been seen and everything, and get the tests done to rule out some other possibilities, but it was kinda weird feeling like oh, he's not as bad as they thought, but its not my fault… He did spend the night and get the MRI done, which did show slightly increased size of one tumor in the left temporal area, and swelling there.
I guess dad will be on dexamethasone the rest of his life… it's already been since April!!!
Just wanted to recount the story. I'm glad everythign was managable, but boy I am exhausted after all the running around over town, worrying, trying to get the accurate story to drs, waiting hours for discharge… and of course I got the usual all day tension headache that comes FREE with every hospital visit we make!!! On top of that, I got to remind dad, whoc is still confused just on certain details, why we are there and to stop calling the family to tell them made up stories about what we are there for, like brain surgery. (?!?)
SIncerely Exhausted,
DF
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