As it was already past 7:00 the evening we were admitted to the hospital, we suspected we’d be staying at least one more night as well. We weren’t exactly wrong – we were admitted Wednesday, August 31, and didn’t leave until Sunday, September 4. From what I’ve read, this is an insanely short stay when compared with other children going through the same experience, but it felt never-ending to us at the time.
There was no question in either of our minds that we were both going to remain with Love Bug for her entire stay, and we were incredibly grateful to have a single room with a chair that pulled out into a twin bed, and a roll-away twin as well. I drove home after Love Bug fell asleep the first night, to pick up an overnight bag for each of us. Hilariously (ironically?), we had packed an overnight bag with us the week prior, when we met with Dr. L, but when we weren’t admitted at that time, we decided not to pack one this time around in an effort to not jinx ourselves. Whitney came out to pick me up when I was too weary and broken and needed fresh air the following night, and Chris joined our friends for our weekly board game night on Friday, at my insisting, to give him a bit of a break.
None of us slept much during our stay, which is perhaps par for the course in a hospital, but made exponentially worse with a toddler. Between the uncomfortable accommodations, the stressful situation, and the fact that nurses came in to check Love Bug’s vitals every 4 hours or so, everyone – including Love Bug – was waking up every couple of hours. I’m not sure how we spent our days. I know Chris’s parents came to visit, as did mine, and so did Whitney and our sister-in-law, Love Bug’s Auntie Katie. We sang a lot of songs, and watched a lot of Frozen, Tinkerbell, and Sprout.
Thursday morning found us in sedation, where Love Bug was being administered “giggle juice” in preparation for the EMG. Typically the patient is conscious during an EMG, so they can give feedback on what they feel or don’t feel. An electrical pulse is sent through needle-like electrodes that are inserted into the muscle. The amount and speed of the impulse is measured as a way of determining the location and extent of nerve damage.
After the EMG, Love Bug underwent full anesthesia for two MRIs – a brain scan and a spinal scan – and a lumbar puncture (spinal tap). The brain scan came back normal, but the spinal scan came back showing lesions on the anterior horns of Love Bug’s spine, from C3-C6. Love Bug’s brain was sending all the right signals to her arm, but her arm wasn’t able to receive them due to the damage. There was a small lesion on the left side of her spine as well, but luckily it didn’t appear to be causing any complications, and there was no reason to think it would grow. I don’t know if we just started treatment at the right time, or what, but the thought that Love Bug could have lost the use of both arms was simply sickening and terrifying.
The lumbar puncture came back positive for Enterovirus D68; this ended up being the final piece of the puzzle, and later that day, after Love Bug came up from 7 hours of unconsciousness, the attending physician – Dr. G – informed us of what would be our final diagnosis.
Love Bug was suffering (and continues to suffer) from an incredibly rare (as in one in a million) polio-like disease called Acute Flaccid Myelitis, from which she might never recover.