It was bitterly cold the morning of February 5. We scuttled from our motel room to the van, hunched inside our coats, clutching our bags and our hopes.
We had driven out to the Pittsburgh suburbs the previous evening and rented a motel room for the night, so we didn’t have to crawl out of bed at 3:15 this morning. But this foresight wasn’t as helpful as I had expected. It had rained and then snowed during the night, and every hour, a snowplow roared through the motel parking lot. Not that I was sleeping anyway, but that truck provided one more reason for insomnia.
Despite my wakefulness, I had heard no seizures during the night. This weighed on me more than I wanted to admit. I was supposed to be trusting God, but really, God, this is the eleventh hour. When are You going to get with it?
I opened the van door for Tarica, yanking to loosen the frozen latch. A shower of snow fell inside. I brushed off her seat and boosted her into her booster. When I pulled open my door, a larger shower fell, covering half my seat.
Tarica giggled. “You’re gonna have to sit in the snow, Mommy.” She had been alternating between an unnatural quiet and a bubbly hyperactivity in the last 24 hours. For the moment, she was bubbly again.
On the way to the hospital, we swung in at MacDonald’s for a to-go breakfast. Tarica ate a third of her egg sandwich before surrendering it to her father. I wondered if her stomach felt anything like mine. I ate, because I knew I had to. A five year old is not experienced enough to know that sometimes necessity trumps disinterest.
We arrived at Children’s Hospital around seven. After signing admission papers, we were taken up to the Epilepsy Center on floor six and shown to EP4, the room which was to be Tarica’s world for the next ten days. The EMU (Epilepsy Monitoring Unit) is small, with only eight rooms and a small staff. Because no one here is sick, the unit has a relaxed air. The only excitement is a BEEP…BEEP…BEEP when someone has a seizure.
As Jayne, the nurse, was going over the paperwork with us, she asked, “She’s had nothing to eat or drink this morning, correct?”
Linford and I blinked at each other.
“Uh, no, she ate a little,” I said. “Wasn’t she supposed to? Nobody told us not to feed her.”
“She’s supposed to go for a PET scan this morning,” Jayne said, “but not if she’s eaten.”
What a lovely beginning. Not only was Tarica not seizing, but now her PET scan needed to be rescheduled—and we hadn’t been there even an hour.
Tomorrow, Jayne said. We’ll see if we can do the PET scan tomorrow. If so, no food or drink after midnight. We’ll let you know.
With that, we moved on to the next detail: attaching 26 EEG wires to Tarica’s head.
She was allowed a little more freedom with the VEEG (video EEG) than I expected. The wires are long; she could be almost anywhere in her room. Someone was watching her all the time, turning the ceiling-mounted cameras to follow her when she moved.
An IV technician came in. Tarica tensed as soon as she figured out what was going to happen. I climbed on the bed behind Tarica and held her. Even before the big rubber band was wrapped around her arm, she was fighting. The tech called the nurse in to help hold her down, Linford having gone out to the van for the suitcases.
“Hey, baby girl, you need to calm down,” the tech said. “When you fight, it makes it harder to find a vein.”
Tarica wasn’t listening.
They finally found a vein and slid the needle in. And then the vein blew. The tech tried in the other arm. That vein blew, too.
Tarica was hysterical. “I’ll try again later,” the tech said. She packed up her bag and left.
I dried Tarica’s tears (and mine) and comforted her. We talked about being brave and we talked about opening a present. I think it was the present that composed her. What five year old with a needle phobia cares about bravery?
When another IV tech came a little later, Tarica was calmer. We pulled a gift out, and while they looked for a good vein, I helped her open the gift. The distraction helped. When the needle went in, she cried, but not piercingly, and she didn’t fight.
However, when this vein blew, too, she wailed, “Are they gonna poke me again?”
But the fourth vein held.
The gift included several sheets of stickers. Tarica picked a sticker out for everyone in the room and stuck them on us. We all were smiling, me the broadest of all, because it was over and because she plastered three stickers on me. It felt like gratitude and love, and it warmed me.
Tarica was given a small dose of Carbatrol. Linford went out to the van for another load, muttering something about pack mules as he went. We found corners to stash our bags and boxes. While Linford was with Tarica, I trotted over to the hospital library, conveniently located just outside the Epilepsy Center, and checked out a stack of children’s books. We met the PA (physician’s assistant) of the unit. I asked Tarica what she wanted to order for lunch, and that occupied a good fifteen minutes. We opened another gift, an activity book with a dry-erase marker, and I helped her work through it.
When the doctor and the PA came in early that afternoon, the doctor said that Tarica was officially off medication now. “Now we will wait for her to seize.”
Linford asked him, “Why did her seizures suddenly ease up after months of intensity?”
The doctor said a whole lot of words which amounted to “I don’t know.” Epilepsy, he said, is taken on a case by case basis. While we can learn from studying multiple cases, it still doesn’t give solid answers for what to predict or exactly how to treat each individual case.
I asked, “Why did her seizures intensify so quickly in less than a year? Epilepsy doesn’t generally worsen over time.”
He said pretty much the same thing in reply.
Epilepsy, it appears, has a lot of exceptions and few rules.
We did a lot of waiting and sitting on that first day—but no seizing. Tarica was in good spirits, now that the wire- and needle-attaching were behind her. If she seized, we were to push a red event button, which would sound an alarm, bring in the nurse, and make a mark on the VEEG—a seizure was here.
Linford left around six that evening. I felt vulnerable and alone as we waved goodbye. Tarica and I ate supper and entertained ourselves. I read a whole stack of books to her. I also kept offering her food. The PET scan had been scheduled for the following morning. Nothing to eat or drink after midnight. But she wasn’t hungry.
She was wired, literally and mentally. It took her some time to settle down—and much readjusting of her hospital bed—but once she stopped wiggling, she fell asleep almost instantly. I also fell asleep, and much to my surprise, we were left alone the whole night. And why not? All the nurse needed to do was check the video to see what she was doing.
For a hospital night, it was restful.
* * *
The story continues on Day Two, Part One.