I was released from the hospital on a late Thursday afternoon with a giant splint on my right leg and an equally giant list of prescriptions to fill. We dropped off the prescription list at a chain pharmacy and made a beeline to Rubio’s for the meal I had been missing the most – a grilled shrimp burrito with pinto beans and chips. We sat in the car and stuffed our faces with delicious SoCal cuisine, elated to be liberated from the the claustrophobia-inducing hospital room.
At first I was just uncomfortable with sitting up; by the time we had waited an hour for the prescriptions, I was sweating and shaking from lower back pain. So, it’s not hard to imagine my response when we were told that the pharmacy didn’t have enough Oxycodone to fill my Rx. Somehow, it ended up taking almost two and a half hours to fill my assorted prescriptions and go home.
Arriving home presented a new challenge. We literally couldn’t figure out how to get me into the house. This was an emotional low point as we wondered how we were going to make it at home if we couldn’t solve what seemed to be the simplest of problems. No one at the hospital had thought to show Mrs. Loco how to get my wheelchair over the 3″ ledge on almost every house in Arizona – my in-home physical therapist would show us how to do it a couple days later, but that evening, we had to solicit the help of a neighbor to lift the chair over the lip and into the doorway.
Over the next two weeks, a physical therapist and nurse worked with me to rebuild strength and keep me healthy at home. They were great, but I was basically exhausted all of the time. Even when I thought I had plenty of energy, I would get completely wiped out from doing the simple things. Seriously, one morning I took a shower and immediately afterward had to take a four hour nap. Two weeks after surgery, we went to the Ortho’s office to replace the splint with a real cast. I felt great during the appointment, but by the time it was over and we had picked up a blizzard on the way home, I was done. I slept the entire afternoon, woke up to take some meds and have dinner, and slept the rest of the night.
As the days went by, I felt like I was getting stronger and more coordinated. Transitioning from the couch to the walker and then to the wheelchair (or vice versa) got easier and, at least from my perspective, smoother. At the same time, my right foot started to feel like it had been run over by a car. I wasn’t sure if I was finally regaining sensation in that foot (it wasn’t coming back in the left) or the cast was too tight.
Guillain-Barre hadn’t just affected my muscular nervous system. Throughout my hospital stay, my blood pressure and heart rate were extremely elevated. Uncontrolled by medication, it was not uncommon for a routine vitals check to show my BP greater than 150/100 and a resting heart rate over 120. The neurologist said this was the effect of GBS on the autonomic nervous system. It was controlled, at least somewhat, with cardiac drugs. After release, I was having episodes wherein I would suddenly get hot, sweaty and dizzy. I found that during these episodes, my heart rate was spiking into the high 130s. My meds had to be adjusted several times to stabilize my heart rate in the 100s, each adjustment requiring a trip to a cardiologist (who Mrs. Loco and I believe to be at least slightly senile – he had a tendency to repeat himself ad nauseum and sometimes contradicted his own statements).
After two weeks at home, we were finally settling into a routine – bathing, grooming, eating, working, physical therapy were becoming easy, which was finally starting to make us confident that we could get through the whole recovery, one day at a time. Which is why starting almost the entire process over again on the day before Father’s Day was like getting kicked in the ribs when I was just starting to get back up.