We thought we knew that the phrase “life altering experience” meant. I mean, hubby had spent several days seriously ill but I would never classify it as “fighting for his life”. He was uncomfortable but the people were pleasant and the hospital room was private and neat. We could even talk up the convenience of the location. Here I had his parents to help with the kids and to visit hubby when I couldn’t. We have support and good friends in Atlanta but nothing like having his parents in the same house with us.
So a couple days later, when hubby had been home for a couple of days, I didn’t really think anything of his being tired. He wasn’t supposed to be walking around a lot mainly because they didn’t want the incision to open but also because he had wound vac on his foot and it made movement difficult. But still, John walked around the house, could come to the dinner table, visit the bathroom on his own, that sort of thing.
John’s parents’ house is more convenient that ours in this respect. They have a ground floor bedroom and a handicap friendly bathroom with a roll-in shower. He slept in their room and they slept elsewhere. I kept our room upstairs so I could be close to the kids.
But as a couple of days passed, I noticed John getting up less and less. I noticed his appetite waning and then the vomiting started. Hubby’s tummy has always been sensitive. He said he was stopped up (ie constipated) and when that happens, nothing goes down either.
The home health nurse who tended to the wound vac suggested coffee-temperature prune juice and stool softener and this seems to help but he still continued to vomit and would not even consider going to the hospital or calling the doctor.
The thing that finally pushed him to the edge was when he got stuck on the couch. His legs, he said, were weak and wouldn’t lift him from the couch. We tried chairs, cushions, a walker that his parents’ just happened to have, you name it.
After what can be described as the crazy antics of Lucy and Ethel, John finally crawled through the living room and to a bench in his parents room as a last ditch effort to hoist himself up only using his weakening arms.
I watched him get weaker and weaker over a few minutes and then I finally asked that fateful question: “Are you ready for me to call 911?”
Bless his heart, he was.
After the EMTs hoisted him up (using a bedsheet of all things to lift him), they took him to the hospital. The ER doc thought he was just dehydrated but was also concerned about his blood pressure which was uncharacteristically high.
Next day, the hospitalist evaluated him and treated him for dehydration but noticed how weak he was. Two days later, John could no longer lift his legs or roll over in bed on his own. His hands were weak and physical therapy noted increasing weakness as the days went by. By day 4, it was very clear that John was very sick.
On day four, after a lumbar puncture, various x-rays, CT scans, and MRI’s, the hospitalist and the neurologist diagnosed him with Guillain-Barre syndrome.
Guillain-Barre Syndrome (pronounced gee-yan bah-ray) is a rare disorder that people get after some sort of stress on the immune system. The immune system is attacking the peripheral nervous system – arms, legs, fingers, toes and works its way up often progressing to the muscles in the chest and throat.
The syndrome attacks the covering on the nerves – the myelin sheath – destroying it and making it difficult for the nerves to transmit information to his brain. It’s similar to MS but instead of progressing over months or years, GBS progresses over days or even hours.
Many people end up in the ICU with a respirator before doctors are able to diagnose or treat.
Physically, he is having a little trouble talking. He cannot move his legs at all nor can he stand on them for long without help. He also has some weakness in his hands, arms, and shoulders. Therapy gets him into a comfy chair for short periods but otherwise he is bedridden.
The doctors believe they have halted the progress and we keep hearing that we’re lucky he’s not in ICU on a respirator. He has been fighting for his life the last few days and praise God that we’ve come so far.
As awful as it all sounds, he is working hard with respiratory, occupational, and physical therapists daily. We have hope of a full recovery – as is quite common with GBS- but it’s going to take a lot of work and weeks or even months of rehab.
This is a life changing experience and I don’t think any of us will be the same again.