A few weeks ago, Robby and I went to Manchester, England, and Edinburgh, Scotland for a 10 day trip. The first day we were in Manchester, we ate at the hotel restaurant (a very nice hotel and what looked like a nice restaurant). Within 12 hours, Robby came down with food poisoning from what we assume was undercooked poultry. After 12 hours, symptoms ended, energy came back and we went on with the rest of our trip as planned; we went to a Manchester United match, museums, castles, walked 20k steps a day in Edinburgh, and everything was normal.
2 weeks later back at home, Robby had a little bit of back pain on Mon/Tue morning. By Wed morning, Robby dropped me off at the airport for a work trip to Canada. By Wed midday, Robby started getting tingles in his left leg, and went to urgent care immediately. They misdiagnosed as sciatica and gave him a referral for physical therapy (PT). He saw the PT had an availability first thing Thu AM, so he took it. The physical therapist immediately said that he not only had weakness in his lower body but his upper body as well. Said he could not definitively say, but perhaps a herniated disc, and recommended that he get scans. The best part of the physical therapist is that he said to not wait to get into a spine center because it would take a couple weeks. He recommended to go to the ER to get scans immediately. Robby listened and had his mom take him to the ER at Ohio State. Within a couple hours, they said they were admitting him for Guillain Barre Syndrome, an autoimmune disorder where your antibodies attack the myelin sheath that protects your nerves, often causing paralysis in all 4 limbs, difficulty swallowing, tingling and numbness in your extremities, along with a couple other things.
As of today Sat May 2nd, Robby has been in the hospital for 10 days, with 4 nights of those in the ICU. He received what’s called an IVIG treatment which essentially sends good antibodies in to stop the current antibodies from attacking what they shouldn’t. He received the typical dosage administered over 5 days and has responded well, avoiding severe action like intubation, tracheotomy, etc. The hospital has submitted the paperwork to discharge him to an in-patient rehab facility (Dodd has accepted him and has a bed open) as soon as insurance pre-authorizes.
Though treatment has gone well, I cannot describe the pain of watching your spouse go through the worst pain of his life. He is currently quadriplegic, unable to lift his arms, legs, or even sit up. I have been here with him 24/7 to help him do the smallest and largest of things: press the nurse call button, adjust the bed up/down, relieve himself, bathe him, and calm his major anxiety. If you know Robby well, you know his is the calmest, most logical person and literally does not know what anxiety feels like…until now unfortunately. (He is receiving treatment for anxiety as well.)
He is incredibly eager to return to his normal life. He wants it all back, like, now. Which is great he has the drive! He will get it all back. The best part about receiving a Guillain Barre diagnosis is that over 95% of patients get back to 100%, never knowing they had it. The other best part is that although it is an autoimmune disorder, it does not return as it is considered a monophasic illness. So one and done! Thank god.
All this being said, he has a long road to get back. We do not know yet how long he will be in in-patient and out-patient rehab, but we know it will be months to return to normal.
Financially, we make great money, manage it responsibly, and he has good insurance. But having spent 4 nights in the ICU, plus you never know what insurance will and will not cover….we need help.
Please send healing thoughts to Robby! He will make it through this and get back to the life he loves. Thanks in advance for any and all support. It means the absolute world to us—shedding happy tears over here at the amazing family and friends we have. Love you all. ♥️