I was a nurse for just over six years. I learned these past four days that being on the other side of things sucks. Hard.
Last Tuesday, my daddio began feeling some strange tingling in his feet and legs. The Saturday before, he stumbled while walking down the hall. He thought nothing of it, simply lost his footing. Wednesday came and the tingling turned to numbness. Thursday, he could barely walk. After some yelling and threatening (Bob can be quite stubborn), my mom dragged his ass into the ER.
He hasn’t left the hospital since.
My dad was diagnosed with Guillain-Barre Syndrome (GBS) on Friday after a litany of tests and ruling out of other diagnoses. GBS is a shit disorder in which your immune system goes wonky and starts attacking your nervous system. It usually begins with an infection—something my dad classically presented with: a GI bug followed by laryngitis. GBS causes ascending weakness that, if left untreated, can lead to paralysis.
Because of the severity of the illness, Dad was transferred to the ICU late Friday evening to monitor his breathing and blood pressure. We are very lucky that treatment began before the weakness progressed to his lungs. Besides being on oxygen, Dad has not needed a ventilator or any other respiratory help. Still, all of this has been terrifying.
On Friday night in the ICU, his blood pressure got as high as 239/117. I’ve never seen a number that high in all my life. The ICU nurses worked fast to start him on a continuous drip to bring it down. We are still fighting the blood pressure battle and know that we will need to while the GBS runs its course. (GBS can cause autonomic responses that can affect your heart rate and blood pressure).
It’ll be a long ride for my dad. He’s currently receiving 5 days of a drug called IVIG. Today will be dose #4. IVIG is not a cure, it is simply supportive and slows the progression of GBS. We are also waiting on the results of his lumbar puncture because the spinal fluid looks to be growing infection. Once we figure out that part, his blood pressure stabilizes and his weakness plateaus, he will be discharged from the hospital to an inpatient rehab center. We are not sure how long he will be there, but the rehab will be extensive in order for my dad to regain function of his legs.
Needless to say, our brains are pretty mush. It’s interesting and frustrating to be on this side of the equation. I worked my entire nursing career in a pediatric hospital, and I am in awe that I ever once complained about poor communication there. I’d like to retract those complaints—the communication was a million times better than what we’ve received here.
I really can’t and don’t want to complain too much. The nurses and neurology team have been excellent. We just aren’t always listened to as well as we’d like to be. And sometimes it can take an entire day to get our questions answered. Kasey, my sister, is also a nurse, and I think we have been pretty good about staying out of the way. But when it comes to our dad, we aren’t messing around. We’ll fight to make sure he is taken care of and nothing is being missed.
They probably hate us, haha.
We’ve been told GBS is a marathon and not a sprint. And boy, is that correct. Some moments Dad seems like his old self and I’m thinking “wtf is he doing in an ICU?” But then his weakness surges, and its horrible to witness.
We need our dad. We need him healthy and happy and at home.
Whatever you pray to or think to, add my daddio to your list, please. Pray for no infection, pray for full restoration of the nerves in his legs. Pray for his company to remain afloat while he takes the time to heal. Pray for his mental wellbeing that he keeps his humor (he has so far).
Just wanted to give everyone an update on what’s been going on.
This is pretty dang hard.
Until next time,
P.S. Thank you to everyone that has texted/called/reached out. I'm sorry for not always answering, but know every text and message is read and greatly appreciated!!