I spent this week in the hospital with my youngest, Inara, for a weeklong EMU (Epilepsy Monitoring Unit). Her seizures have been under control since January, at a very high dosage of anti-convulsants, but late this summer, her body began having sudden and distressing spasms.
As her neurologist and we thought they were likely seizures, we were worried, deeply, that we might have to risk lifting her dosages to dangerous levels (I wrote about that dread here). So began a series of tests, including an all-night vigil prior to an EEG that proved inconclusive. I spent that night rocking Inara, reading to her from The Silmarillion and The Zombie Bible (the less violent passages), and keeping us both awake.
This week, we went to the hospital for a weeklong, 24/7 EEG. Here is the story of how that went and what we found.
The caption her mother supplied:
“Mommy, they’re going to steal my thoughts and the mysteries of the universe that I keep silently in my brain, and sell them to Stephen Hawking.”
Five days in, we have monitored four of her spasms, enough for the resident neurologist at this hospital to indicate that these spasms are almost certainly not epileptic — they are not seizures.
And that means that Inara’s high-dosage medicines have been keeping her seizures under control successfully.
And that means we don’t need to approach the extremely difficult and no-win decision of whether to increase her dosages into dangerous territory.
It is incredible and unexpected news. We didn’t expect to be told that these spasms weren’t seizures. We expected to capture enough information about them to be absolutely sure of what we were looking at and to make the best possible decisions we could about her medication. Her skilled doctors have instead handed us a best-case scenario we didn’t dare hope for.
A vast community — my church, my readers, fellow writers, coworkers, friends — have been praying for little Inara, or keeping her in their thoughts, or sending good vibes. Some have even brought food for my family or have given hours of their time to help. A dear friend brought a check in a sealed envelope from our church’s benevolence fund. Inara’s three-year-old sister River has given her fullest support, too; when visiting the hospital, she climbed into Inara’s crib with her and kept her company.
Many of you have followed Inara’s story and have cared for her, even at a distance. Thank you.
Of course, she is still having spasms that lock up parts of her body and cause her distress, and we still need to track down what these spasms actually are. But just knowing that we will not need to choose this winter between endangering her brain and nervous system and endangering her kidneys…for the first time in a few months, I feel real hope.
Tonight, I just held her for a while. Felt her tiny, fierce heartbeat. And wept.