The day before school starts is a crazy day for teachers. We are trying to get everything ready to welcome new students, adjusting out of our summer lives and back to work life.
I was just finishing up some paperwork or laminating. My phone dinged and I casually looked over at it. Our doorbell camera sensed a passing vehicle - a firetruck. I thought, “Oh, our poor neighbors! I wonder who is having a problem.” And then, I noticed the very end of the clip - a firefighter jumping off the back of the truck in front of the house.
I clicked the notification and opened the app. The camera showed a firefighter running up the walkway to the front door. I swiped it away and called Chris.
I don’t know how he is always so calm. My reaction to stress is so very opposite, I can’t always process his reactions. My brain is screaming, my heart is racing, my voice is loud, and I am trying to slow down enough to make even one concrete decision. I often cry, or freeze up. His brain takes in the information and sorts it out, makes quick decisions, remembers details and files through every past situation for what we need.
So, I sputter out, “What is happening?!” and he responds in an even tone, “You should come now. Scarlett is having a seizure. The ambulance is here and we are going to the hospital.You can meet us there.”
I grab my bag and run. I lock my classroom door and debate if I should yell down the hall that I have to leave; I decide not to, since I don’t want to throw everyone’s day into chaos. I run over to the next room and just blurt out something like, “I have to go, my daughter is having a seizure.” I run through the office and say it again. I nearly run into the principal, who thankfully knows me well enough to know that when I am running out, something is serious. I tell her I have to go to the hospital.
I jump in the car and try to get out of the lot without screeching my tires. I made a call and had a substitute teacher arranged before I even got to the freeway. I hurry to get across several lanes of traffic to the express lane and go as fast as I can.
It’s about 15 miles from work to home, and another 5 miles or so further to the hospital on some of the most traffic-plagued stretches of road in the country, but that day, I lucked out and hit very few snags. I pulled off the highway toward the hospital and the ambulance was directly in front of me. I watch them pull into the emergency room bay, and continue to the parking lot.
I got into the ER as they were assessing her. We are giving her history, automatically regurgitating birthdate, medications, dosages, last doses, last medical visits.
“What seizure medication does she take?”
“None. She hasn’t had a seizure in 9 years.”
She had seizures with the initial tumor at 2 months old, and then at 3 years old, had a mysterious bout with absence seizures, estimated to have been hundreds a day when we finally figured it out. Since those resolved, she has not had any seizures or noticeable neurological disturbances.
This time, she was napping on the couch. Nothing out of the ordinary had been happening, just a normal day. Her caregiver noticed her moving strangely, and quickly recognized it as a seizure. Thankfully she was trained for seizures with a previous client and knew what to do and not to do. Chris arrived home 2 minutes later, and they called 911.
Scarlett’s full body seized violently. When the paramedics arrived, they noticed she was beginning to overheat; they asked Chris to get all the frozen food from our freezer and began to pack them around her body to bring her body temperature down. They administered a nasal medication to stop the seizure. After a few minutes of no change, they gave it again. The seizing finally stopped more than 20 minutes after it began.
By the time she got to the hospital, she was resting peacefully. Her body temperature had normalized and all her vital signs were normal. Chris took the car and went back home to relieve Briana, who had stayed with Benny and Evie; I settled in for whatever was coming.
Our first instinct is to consider tumors and shunt issues. She got a quick-scan MRI to check for shunt malfunction. She had an x-ray series to rule out any other shunt-related issues. They drew labs - nothing of note. No one says explicitly “No tumor” but I try to tell myself that no news is good news in that department. I asked several times what might bring this on if it isn’t that; no one has a clear answer for me. Someone mentions that it can just happen sometimes in puberty. We’re definitely in that zone, so maybe it’s a factor, but I haven’t ever heard of seizures being a typical issue in puberty…is she “lucky” or is there some correlation to something else? No one knows. I ask when we will see a neurologist; they are noncommittal.
They decide they have to rule out a urinary tract infection; again, since when is a 20+ minute seizure a side effect of UTI? But we have to rule it out, and that means we need a urine sample. So, I try to get her to drink. We get some dinner before the cafeteria closes. I get juice and a popsicle from the nurse, and then ice water. I give sips and more sips. She notoriously avoids using the bathroom when she doesn’t want to. After a while and a few drinks, I try to get her to the bathroom. We hobble our way through the ER to the restroom and we try to collect a sample…but nothing. I ask about the neurologist. They say that meds have been ordered - Scarlett will start Keppra. I pause, because no one has talked to us about this at all. She was on this before, and it didn’t work; different year, different seizures, but same kid. I asked if we needed to be concerned with interactions with any of her other medications. The nurse, who I had really liked and had been chatting with a lot, lost me when he casually said, “Oh, probably not. Everyone gets Keppra.” No, everyone doesn’t, and not with a history like Scarlett.
More fluids, another try, nothing. It’s getting later and I am getting anxious about school. I had arrangements if needed, but I hated to miss the first day of school. I teach first grade; the first day is a big deal. We decide to hook her up to an IV to push fluids and hurry this along.
We get moved from the big critical care room to a small room. It’s further away from the nurses, so we stop seeing them very often. The next in a series of doctors comes through, and I ask again when I will see a neurologist, I have questions about this medication and feel like this urinary tract infection is a dead end. The doctor tell me that no one from neurology is going to see her, that we will follow up later, and we have to do all the tests before they will consider anything else.
That was the end of my patience. I was frustrated, tired, cold, and worried. My concerns had been repeatedly minimized. I was anxious about work. I lost my cool with the doctor, snapped at her and then cried about how frustrated I was. “Do you see any other signs of a UTI? Is there any other symptom indicating that might be an issue?” She apologized that I had misunderstood what we were waiting for - anyone who knew anything about a brain tumor - and said we had to rule it out, then left me to wait for pee.
The fluids ran for an hour or so, and Scarlett slept. I write some skeleton of sub plans to relieve myself of the work stress - if I can take that off my plate, just let it go, I can put my focus back where I am now. Work will be fine, the kids will be fine and my coworkers know how to support my students (and know I would never have done it if I didn’t have to!) Letting go of that was a relief.
When the doctor came back, I apologized for my poor response before, and explained why I had felt so pressured to get out as soon as I could. At least now I could just wait.
I gave the fluids about 30 mins, and then made Scarlett wake up to use the bathroom. Finally! Success. We delivered the sample and then waited for results. No surprise, she didn’t have a UTI. Finally, around 11 pm, we were discharged with two new prescriptions - one for daily seizure prevention and one for emergency “rescue” doses to have in case she had another - but no answers about why it happened.
And now, more than 2 months later, we still have no answers. It took over a month to get a new referral for a neurologist and schedule an appointment. She hadn’t needed one in so long that she had been dropped from their rolls. When we finally got the referral, they wanted an EEG; we tried, but Scarlett took one look at the leads to be glued to her head and she threw a tantrum that would not allow it. She is on daily medication until further notice; we have yet to remember the rescue dose when we go anywhere.
There have been no other seizures. Just a dramatic emergency blip in her timeline, I suppose.