On January 24 something very unexpected happened. For the past year or so Grace’s seizures have looked the same: light trigger, left hand comes up, body freezes, then the seizure releases after a few (or more) minutes. However, last Thursday morning while I was at work Grace had a “normal” seizure which then abruptly morphed into something we hadn’t seen before. Her whole body went limp and she struggled to breathe. Paramedics rushed her to the ER where, after several tests, doctors concluded that she had had some sort of rare but not-to-be-unexpected brain flare up. Monitors showed that although outwardly Grace looked like she was struggling to breathe, her brain was still receiving enough oxygen in between gasps. They told us we shouldn’t worry, and she was released later that day.
Last Saturday morning Grace had another of her “new” seizures, but having been reassured by doctors two days before, we kept her at home and she rested afterward. Later that night, however, another seizure came, and this time Grace looked like she was struggling for air even more than before. We called 911 for the second time in three days, and the paramedics once again brought her to the Kaiser Santa Teresa ER near our apartment. It was around 7pm.
Eventually doctors decided that Grace should be transferred for an inpatient EEG monitoring, but since Kaiser Redwood City was full, she was transferred to Stanford Medical Center instead. The ambulance didn’t come to get her until 2:30am, and between the ride over and getting checked in Grace only “slept” from 4-6am that night. By now she had had several more of the new kind of seizure.
The EEG ran throughout Sunday morning, during which time Grace agreed to have a seizure purposefully induced via a doctor shining a light in her eyes. By Sunday afternoon the doctors informed us that the EEG results were inconclusive, and they recommended further outpatient treatment at a Stanford center specializing in neurological disorders.
Grace went home that afternoon and has been at home this past week. We are doing our best to resume our normal daily routines while dealing with the seizures as they come. I have tried to share this update with you all as concisely as possible, with the understanding that as a whole this past week-and-a-half has been unexpected, scary, and tiring.
At this point we are waiting to finalize our referral process to the Stanford center, hoping for little or no exposure to light triggers so that Grace can at least rest and resume her daily routine as safely as possible. Thank you so much for your prayers for us, and we will keep you posted as we learn more! God is faithful and good through it all.