Dec 10, 2021 Latest post:
Jan 29, 2022
Mom is still with us in Illinois!
Mom flew up here to spend Thanksgiving, Jaci's birthday, and attend her IL grandkids’
performance of The Nutcracker Ballet. The last performance was Sunday. That was her last “normal” day. You know my Mom is active. Daily exercise walks, shops, makes meals, cleans.
Sunday night she told me one of her legs felt a bit weak. We chalked it up to her sore knee, the stairs from the basement to
main floor she’s not used to, or “in need of chiropractic adjustment”.
However, in the night she couldn’t stand and walk. She crawled to the bathroom to use the toilet. Somehow she made it back onto her bed.
When she needed to get up again in the morning, she called Steve to help her stand from bed. He came helped her up
& thought she could walk with the support of one of her walking sticks. However she couldn’t bear weight at all on either leg &
fell instead & hit the back of her head on the floor. Poor Mom. Thankfully her head didn’t hurt.
Steve went to the garage and grabbed the walker with seat we still have from when I needed one some years ago. He moved her onto it and wheeled her into the bathroom where Jaci and I helped her use the toilet & back to the walker.
Soon after sitting on the walker, Mom started noticing her grip felt weaker. She couldn’t grasp her coffee cup as normal. She said to call a non-urgent ambulance. I was glad she was calm, but concerned it could be stroke or something I called 911 instead. Thankfully things didn’t get any worse during the time they took her and I met her at ER.
Mom checked out fine in triage with no fever, blood pressure ok, EKG good.
Got in a proper ER room (they let me in thankfully—up to 2 visitors with no COVID symptoms). Her blood work was fairly unremarkable save a few things in line with the sinus infection she had acquired the week before & was already on antibiotic for.
After learning Mom had a COVID booster & flu shot about 6 weeks before & the rapid progression of weakness, the ER dr threw the word “Guillian-Barre Syndrome”. Meanwhile, after consulting with the Attending Neurologist, he admitted her to the hospital to do more testing to get a more sure diagnosis.
They did an MRI of her head and neck l, late into the night, or really, the morning . Nothing on the scans showed anything that would make sense for what was happening. They also ruled out any cardiac issues.
The neurology team ordered more blood work l, and then came back & they agreed she should be treated for her “rapidly progressive weakness”, suspecting AIDP/Guillian-Barre Syndrome. This is an autoimmune response where the body becomes confused and starts fighting against itself.
Apparently a spinal puncture could have confirmed this, but they knew that in case it is this, they needed to act on it right away instead of taking the time to find out.
The way they are treating it currently is with treatment called “plasmapheresis”. You can look that one up as well as Gillian Barre for more info.
Some of it will make you nervous. Just know Mom’s seems to have stopped it’s progression as far as the paralysis. Neurologist is happy for seeing that. Hopefully it means the plasmapheresis is helping her.
They plan to start with 5 treatments and see how she responds. She’s had 3x2 hour treatments the last 3 days. She thinks she’s had a bit of improvement at least in her grip strength. Tomorrow she gets a day off and then they do it again Saturday & Monday & evaluate any next steps after.
Physical therapy has been visiting to evaluate her each day. The next goal is that she can stand to pivot to a chair so that they can release her to probably “acute rehab” which is also in this hospital. The neurologist will also need to feel confident that this isn’t progressing any further.
Mom knows this could be a long journey, but she is staying positive overall so far.
We are grateful for your prayers and support as you consider following along her journey.