GBS round 2
How do people continue to have hope when the entire world seems unfair? It just seems so cruel to go from having such a positive prognosis to a debilitating regression. It was almost to good to be true; Andrew’s recovery timeline with GBS was an anomaly. He returned to work within a month of diagnosis and, despite the pain and numbness, was able to function at a good capacity until this past weekend.
I started to notice some slurring in his speech and the facial paralysis returning. There were times over the past few days when he’d ask me to slow down while walking. I’d catch myself asking Andrew if he were alright after looking exhausted from doing something simple, like tying his shoes.
Next thing I knew, we were at the neurologist, who urged us back to the ER for further treatment. I broke down in tears. I did four loads of laundry so I wouldn’t have to catch up later, knowing we were looking at another week of hell. I made the phone calls that I needed to make and froze most of our food and got work coverage… again. I did logical things like clean my actual garbage can with baby wipes.
My mind went off on a thousand tangents. How are we going to have health insurance or afford to keep our apartment if he’s out of work for a long time. Will we have to move in with my parents or cancel the vacation that we’ve been looking forward to for months. I feel like an insane person jumping ten steps ahead, but I have to consider all of this.
Are we no longer considering Andrew an anomaly? Is he now a typical Guillain Barre patient who could be on a ventilator and out of commission for months? I know I should be positive, but it’s hard. You start to think that you did something to deserve this. Did I push him too hard to help at home? Did that glass of wine we shared over the weekend damage his nerves. Did he wait to long to get the authorization for outpatient therapy? The neurologist says no to all of it. These things happen and we did nothing wrong.
But you never think it could be you until it is.
Right now, the plan is to give five more IVIG treatments over another week at the hospital; it’s going well so far. I feel like the staff here knows us now… it’s nice, but sad at the same time. I never thought I’d spend so much time in the hospital.
Last night, I left early to be home with Caelan and provide a bit or normalcy. What even is that anymore? After he went to bed, I spent like two hours on my couch, by myself, with a glass of wine. I finally had two seconds of quiet without my kid crying or my husband asking me to do something for him, and all I wanted was my little family to be together again.
I guess that’s where you find the strength to hope.