I’m finding it difficult to get a handle on this post, because it’s a lot of telling, and not a lot of showing. It’s coming out clinical, and not emotional, I think because both Chris and I shut down after the appointment with Dr. L, preparing ourselves for further disappointment the following week. We were so wracked with anxiety, all of our energy was devoted to shielding Love Bug and trying to keep her life as business-as-usual as we could. There wasn’t room to really feel anything else, and still function.
We instantly liked Dr. S, the second orthopedic surgeon – the expert in his field to whom we had been referred by Dr. L. He was young, calm, and confident, and had a child around Love Bug’s age. After speaking with us and observing Love Bug, he refined the diagnosis of a brachial plexus acute onset injury (as per Dr. L) to something called Parsonage Turner Syndrome. The brachial plexus bundle of nerves was still involved, but instead of her paralysis being inexplicably trauma-induced, he suspected it was something neurological.
Dr. S wanted to do an EMG (electromyography) test before treating to confirm the diagnosis, because as far as we could tell, Love Bug hadn’t experienced any episodes of severe pain or numbness typical with PTS onset in the weeks leading up to her paralysis. He also wanted to get a second (…fifth?) opinion, and recommended we meet with a neurologist he often partners with – especially since the neurologist would be the one performing the EMG.
While at the time it felt like we were being passed off from one person who didn’t want to deal with us to another, I’ve come to really appreciate the lack of ego we experienced with every specialist we met. I know now (and probably knew then, intellectually if not emotionally) that they were determined to give Love Bug the best care possible, and if doing so meant recommending another specialist, someone more qualified than they were to diagnose and treat her, so be it. There was no posturing, no possessiveness. There was just genuine concern and resolve to make certain the right person for the job was on the case.
In the moment, though, I was on the verge of bursting into tears and hysterical panic. I don’t know if I begged them to make the neurologist appointment happen that day, or if I just have that impression in hind-sight. I’d like to think we made an effort to be diplomatic, and not incoherently freaked out, but regardless, we made the point that we’d already been waiting ten days with no answers, and no signs of improvement, and were both clearly at the end of our ropes. The attending occupational therapist went above and beyond, working with both orthopedics and neurology, to get us in with the neurologist that day.
We were told the neurologist, Dr. Y, may have time in between her appointments to see us around 2:30, and could we wait around until then?
Yes. Obviously. Thank you.
It wasn’t even noon yet, so to kill time we grabbed food from the lobby cafe (pizza bagels, much to Love Bug’s utter and never-ending delight – talk about setting a precedent for whenever we’re in that building) and moseyed around the courtyard for a bit, letting Love Bug walk along the fountain walls back and forth and back again. We ventured to a bookstore several blocks away, in the hopes that we could pick up something to read with Love Bug to help keep her occupied, but discovered it was a university bookstore, and thus had very little in the way of children’s books. We did find a Dr. Seuss collection, so grabbed that, and by the time we made it back to the campus, it was time for our appointment.
I don’t recall waiting long before we were taken to a room. Dr. Y visited us between appointments, whenever she could break away, to examine Love Bug and observe her, asking us the same questions we’d already answered countless times over the past two weeks. Ultimately, she agreed that an EMG was a good idea, but also wanted to perform an MRI and a spinal tap for additional information. She didn’t know if she had time in her schedule that week to perform the tests, nor if an MRI room was even available within the next 24 hours, and to make matters especially anxiety-inducing, she was leaving for vacation that weekend.
Lucky for us, I suppose, the more we talked and the more she interacted with Love Bug, the more she wanted the tests done by her ASAP, and to that end made arrangements for us to finally (FINALLY!) be admitted to the hospital, with the hopes that she could fit us in the following day for at least the EMG, and maybe the MRI and spinal tap. She left to coordinate everything, and told us she – or someone – would touch base with us as to where we’d be staying.
The rush of relief and gratitude we experienced was eclipsed over time by blinding frustration and distress as hours – hours – passed, with no word from anyone. Several times we attempted to follow up with random nurses we’d catch, or check in at the front desk, but each time we were told they’d reach out to Dr. Y and have her get back to us, to no avail. Eventually, on one of my walks with Love Bug around the floor, I ran into Dr. Y, purse over her shoulder, clearly leaving for the day. She looked surprised to see me.
I don’t know where the communication broke down – I can only assume Person A thought Person B was handling it, and Person B thought Person A was, and in the end, nobody was.
Regardless, Dr. Y was able to direct us as to which ward we’d be checking into, and how to go about it, and that was that. We checked into our room for the night, suspecting we’d probably be there the following night as well.
We weren’t exactly wrong.