Hello everyone. I’m new to this site. Kind of looking for some insight, info…and a place to hopefully be put at ease about some of my concerns and frustrations. Fair warning, this will be long.
My wife had been battling stomach issues for several months. She was admitted on three several occasions to a hospital due to dehydration over the span of a couple of months (October - November). The diagnosis was Diabetic Gastroperesis. Most everything that went down came back up. Near the end of November, she’d lost about 60 pounds. About that same time, she began having trouble standing and walking. The day after Thanksgiving, she couldn’t stand at all. We both assumed it was the lack of nutrition causing weakness. We opted to go to a different hospital to get another opinion.
In the ER of the new hospital, they quickly figured out she had ketoacidosis. She hadn’t been taking insulin because she hadn’t been eating. Doesn’t really add to this story, but the ER doc said “ketoacidosis doesn’t explain why she can’t stand. We are admitting her for more tests”. Long story short, the neurologist figured out what was happening and opted to start IVIG before even doing the spinal tap. He felt like immediate treatment was crucial. He was correct about his assessment. Results came back with GB-1. Also has a variant of Miller-Fisher.
After 5 treatments of IVIG and 2 weeks of worsening (paralysis had climbed up her body), they did plasmapheresis. I believe it was 5 treatments. Every other day. Her condition worsened to the point she was intubated. I’d done my “online research” and knew this was most likely coming. A feeding tube had already been put in as well.
3 weeks later, the trach was done as well as the peg (I think that’s what it’s called). A week later, we are in a LTAC. She’s been here about a week and a half. Probably a similar story to a lot of other patients with this sydrome. She can move her head and occasionally her shoulders. Nothing below that.
I have a few concerns and hopefully someone here has experienced some of this and can maybe shed some light on it.
She seems “out of it” for lack of better words. Some days I can ask her questions and she will nod “yes” or “no”. Other days, a blank stare. She is on pain meds (also has arthritis), so that may be some of it. Maybe not, I don’t know. Constantly hot or cold. I’m either turning her fan on or off while I’m here. I’ve read other people say they were hot while having GBS.
At the LTAC, it seems as though getting her off the vent is the number 1 priority. I understand that. Getting off of it sooner rather than later is probably better long term. However, a couple days ago, they’d taken her machine down to the point that she was doing all (or at least most of) the work. I don’t know all of the terminology of the machine settings. Anyway, vitals crashed after being on it all day. Heart rate dropped to 40, oxygen saturation fell to the low 80’s. They changed the settings and put her back on full vent … disaster averted. But, that whole day she was basically unresponsive. Blank stare. I asked the doctor about it and he agreed that something was “off”. Blood test showed high CO2 levels. The ventilator was increased (more bpm) to get the high CO2 out. Much more responsive today, yet not completely “there”. This bothers me more than the paralysis. Maybe it shouldn’t.
If I understand GBS, it ascends up the body and then at some point will descend back down. In my non doctor mind, it only makes sense that until this begins to descend, the lungs won’t function correctly? Am I way off on that thought?
I’m keeping a daily log for her to someday be able to read. I keep a pretty detailed account of not only her daily “happenings” but also everything on with myself and our 2 boys (16 and 21). Her dad is up here every day, twice a day. I come up after work every day. If I was in her shoes, I know I’d want to see familiar faces. I don’t have the heart to leave while she’s awake. I wait until she goes to sleep from the night time meds around 10:00 pm every night.
They’re doing physical therapy every other day (I think it’s called passive???). They have boots on and off to prevent foot drop and have things on her hands to prevent…something, I can’t remember. Sorry, it’s been a whirlwind for the last 2 months.
I know all of this takes time. It sure would be nice to see SOMETHING positive at some point.