Mom is on the slow road to recovery, and life is on the fast track to crazytown.
She’s been in the rehab facility for 10 days. She can walk about 70 feet with a walker. She got her gastric feeding tube removed today. She’s doing better with the trach, but I don’t think the glottal stenosis is clearing up. She still has a hard time breathing out up past the area of occlusion. ENT is supposed to do a follow-up exam around the 13th of February.
Her right leg is really unresponsive — it’s unclear as to whether or not this is due to lumbar inflammation or brain injury from the ventral catheter. If the latter, it may take months or years to fully recover.
My biggest perplexity is the panic attacks. She gets them every so often, usually when her trach gets gunky (I’m sure her body has near-death sense memory going from the time in between the removal of the breathing tube and the installation of the tracheotomy). And overall, her normal tendency to focus on the negative instead of the positive has been magnified. The staff will laud her for going up 25 points in the assessment check for the week, and all she can think of is how many times her knees buckled. Her PT therapist told me that people with non-traumatic brain injury (meningitis) tend to have a hard time with perspective — they can’t shut down the freakout thoughts and let themselves relax. Sounds like me when I’m sleep deprived.
Anyway, they had been giving her Ativan “as needed,” but yesterday they started giving her clonazepam instead. She has a benign essential tremor (her hands and arm shakes) that predates all this other crap, and the clonazepam was started to help control that and manage her anxiety in one fell swoop. I dunno about this stuff. Yes, she’s calmer in body and spirit, but she’s so damn tired from it that she can hardly do her therapy sessions. PT and OT both cut short their sessions today, because they were afraid she’d fall if they pushed her. She’s so pale she looks anemic. And she’s got this 40-yard stare — I believe the clinical term is “flat aspect.” Is it better to have her in constant freakout cycles, where she starts to hyperventilate and they have to take breaks during therapy, or is it better to have her in a zombie state where she’s not upset but can barely drag herself through the day?
I’m kinda thinking the former, even though the panic attacks are exhausting for everyone. I’m going to talk to her nurse tomorrow.
Now for the really fun news. She’s getting kicked out by her insurance company on February 7th. She’s going to need live-in care. Her house is twice as big as mine, so my entire family of 4 (plus pets) is moving in with her for a year. We’re renting our house to some friends. We’ve got 2 weeks to empty 6 years’ worth of crap out of our house and combine our homes. Happily, my brother’s FIL owns local storage facilities.
Oh, and I’ll be gone for 4 days of it. I’m finally taking the dog to get her knee fixed. This is my last chance. And I’m also having to squeeze in sessions where I learn how to safely help haul her carcass around the house, clean and suction her trach, and all kind of fun skills I never planned to have. It’s kind of like finding out you’re pregnant, only you don’t get 9 months to prepare, the baby weighs as much as you do, it can talk back, and you never, never get to hand it off to Daddy. Oh God. I can do this, right?
What’s that Chinese curse? May you live in interesting times!