Thought I'd share our story!
Halloween Day, 2017, my husband, Lee Rousey woke up with numb feet, hands and could not taste. He went to work anyway, thinking he had slept wrong, by the time I had the kids ready for trick or treating and was waiting for him to get home, I got a phone call telling me the numbness has worsened and he was going to the ER.
I was worried he had had a stroke as he was a heavy smoker of 30 years, had an extremely stressful job and was overweight. The hospital ran several tests and didn't find anything so thry sent hime home. He was recovering from bronchitis, so the Dr's just thought it was a complication from that.
His symptoms worsened overnight so he back to the ER the next day, this time they kept him for 3 days and ran more tests. The neurologist did several tests for GBS, but they ruled it out because the weakness hadn't set in, only the numbness. Again They sent him home with no diagnoses.
Over the next 3 days I watched my husband deteriorate. By the end of the third day he had fallen twice and we asked strangers walking by to help us get him down our 7 stairs and into the car. As soon as he hobbled into his primary care Dr's office he knew right away and admitted him immediately.
The next 8 weeks were a literal nightmare. We have 3 kids, a 1 and 2 year old together and I have a 12 year old from another relationship. As Lee plummeted into this disease, I sat at home, totally helpless and bewildered with the kids, searching here and there and everywhere for help with the kids so I could be at the hospital everyday, even if just for a short time. I really and truly know what it means now to be in "survival mode." Thankfully his job was extremely supportive and someone was here almost every day to help.
After 4 weeks of progression of the disease, it eventually found it's way into his lungs and breathing. He had to be intubated and spent the next 6 weeks in the ICU of Kaiser San Francisco. They placed a tracheotomy tube in after 3 weeks of intubation and gave us the diagnosis of Axonal GBS because unfortunately, the Axons had also been damaged. At a certain point, the ICU Dr's started letting the kids in to visit him, which was totally amazing, and totally against the rules of the ICU, we are forever grateful for that.
We almost lost Lee twice during his hospital stay. The first time was when it made it's way into his lungs, he could not breathe, he could not reach the damn button for the nurse and by the time he did hit it, it took them 20 minutes to get to him, he was alone and terrified and thought he was going to die. The second time, i was there in the ICU, all his numbers were great and the intubation tube came out, we were excited because that tube was awful. I watched him totally crash when the tube came out and all the Dr's rushed in to get it back in immediately. It was a horrible time.
Lee's symptoms finally started to turn around after about 5 weeks in the ICU, so even though we were told many times, that symptoms start to reverse after about a month, it was a total of 9 weeks of progression for Lee. But once they started reversing, it was a really fast recovery of at least some of his symptoms.
He was transferred after just a few days of having the trach tube out to a rehab facility in Vallejo CA. This was a 3 week program of intensive physical therapy and then he was to come home. He did amazing at the than and though we were really nervous about him coming home, he's really done well in this rehab phase.
It's slow going, he's been home for 10 weeks and he gets a tiny bit stronger everyday. When he got out, he could not make it around 3 isles of the grocery store without being totally wiped out, now he can get through the whole store. It's the little victories we celebrate today. He still cannot feel his feet, this is the biggest source of frustration for him. It's like a constant reminder of GBS, we can only hope and pray his feet come back.
He is set to go back to work in a month or so, though he will have alot of help and limited in what he can do. He has a very demanding job at the suites manager at the Giants stadium. But his work family is like no other. They threw a fundraiser for is last week which was packed with Lee's employees and coworkers. It was truly a moving experience. I just pray he will not push himself when he goes back to work.
What I can say is that recovery is a long road, the worst part is no one can give us a date. How much would we give for a Dr to tell us his feet will come back in 2, 4, 6 months? A year? 3 years? It's just so hard to not know, when or even if they will come back. The rehab phase has many unseen challenges, but we remain forever hopeful and constantly adapt to new normals for our family. We are just grateful he's alive and here to see our babies grow.
Thanks for reading.
