This is part two of our epilepsy story. You can read part one here.
Part one, in summary: Tarica had started having seizures over the weekend. We took her to the pediatrician on Monday; he told us to take her to Children’s Hospital of Pittsburgh. We were going to leave first thing Tuesday, but things don’t always go according to plan.
* * *
Tuesday morning began early for me; my alarm rang at 5:40. All the packing I couldn’t do the previous afternoon had to be finished by 8:00. I made lists, filled suitcases, and by 6:45, I was nearly ready to wake the girls. I was in the kitchen making coffee when Jenica hollered from the girls’ room. “Mom! Mom! Something’s wrong with Tari!”
I raced up the steps and into their bedroom. Tari was strung out across the bed, arms and legs splayed. Eyes rolled up out of sight. Making odd little hiccupping noises. Grey. Convulsing.
“Tari! Tari, can you hear me?” I climbed onto the bed beside her and laid my hand on her chest, felt her galloping heart. “Tarica, baby.” Her breathing—was she breathing? “Oh, dear God, no. Jenica, get Dad.”
She bolted off the bed. Seconds later, Linford flew into the room. What happened next? I cannot say. Terror blurred my senses. Her breathing stopped, and our world with it. I ran for the phone, praying incoherently, and dialed 9-1-1.
While we waited for the ambulance, Tarica regained consciousness but was unable to speak. Linford held her as if he would never let go.
“Who’s going with her?” I asked.
“You are,” Linford said. “You want to.”
“I can go, but I should feed Micah before I leave.” He had awakened amid the hubbub.
Someone—Mom—had gotten him out of his crib, and he was crawling around peering up into our faces. I perched on the sofa, coat on, and nursed him. As he finished, the ambulance came. With a final kiss and squeeze, I gave my baby to Mom. Tarica was loaded up, I jumped in next to her, and we left.
Tarica had five short seizures on the way to the hospital. She was able to talk between seizures but seemed confused. However, when the driver tapped his siren, she had recovered enough to smile.
At Altoona Hospital, the EMTs wheeled Tarica into an ER cubicle. I gave information to various people coming and going. Tarica would need to be transferred, they said. To Children’s Hospital of Pittsburgh. By helicopter.
I relayed this information to Linford by phone. “She is still having seizures, the short ones like she’s been having,” I said, “but she has stabilized.”
“She’s not flying to Pittsburgh. That’s not necessary,” Linford said. “Do you have any idea how much that would cost?”
The doctor stepped into the room. “The flight crew has been alerted,” he said. “You’ll be leaving shortly.”
Into my other ear, Linford said, “Don’t let them fly her.”
To Linford, I said, “Why don’t you talk to the doctor.” I held out the phone. “Here, my husband wants to talk to you.”
The conversation was short. With a tight face, the doctor shoved the phone back at me. “I’ll cancel the flight. She’s having multiple seizures, which can be a serious medical emergency.” Guilt trip delivered, he spun on his heel and stalked out of the room.
We waited. An ambulance crew was notified and would be coming for us soon. At home, Linford finished the packing and stopped in at the ER to see us before he left for Pittsburgh. My mom swung by the hospital with Jenica on the way to school. Our brave six-year-old, who had to sit in school as if her world hadn’t been shaken up. The sisters hugged each other good-bye.
The ambulance crew came and transferred Tarica to a stretcher—reassuring me as they did that a helicopter wasn’t necessary—and within minutes, we were on the road. As we passed a McDonalds, I realized I had not eaten that morning. Neither had Tarica. It was—I looked at the clock—nearly ten. We would be starving by the time we reached Pittsburgh.
As we drove, the seizures continued. Tarica fought sleep brought on by the anti-seizure medication she had been given. We were 20 minutes from Children’s before she drifted off.
At Children’s, Tarica was taken to a room in the ER, and we were promptly set upon by a series of nameless faces who asked for details and disappeared as suddenly as they arrived. Linford and his mom found us, bringing Micah and a bag of MacDonald’s food with them. I was too keyed up to feel hungry, but I ate anyway—if I didn’t eat, a little boy’s food supply would be threatened. I hid the food from Tarica, who needed to go for an MRI with an empty stomach.
Tarica begged for food and water. I slipped her a few ice chips guiltily. A doctor appeared and informed us that the neurology department had been told of Tarica’s arrival and a neurologist would be down after a bit.
More medical personnel arrived to wheel her off for a CT scan, for which our cooperative little girl did not cooperate. They wrapped her up like a burrito and wedged her head between two cushions, but when they slid her into the machine, she wriggled like a caterpillar and screamed. “I want my Pooh blanket,” she wailed, and I left briefly to pass the request along to Linford, who said he’d need to retrieve it from the van. When I returned blanketless, the technicians looked politely harried.
“Daddy is going to get your Pooh blanket,” I told Tarica, but she had decided that she was thirsty now. She screamed and bucked and broke my heart, but at last she quieted—out of exhaustion, no doubt—long enough for the scan to happen. Back in the ER cubicle, her daddy handed her the precious blanket, warm and fuzzy consolation.
After a long wait, EEG technicians arrived and began gluing wires all over Tarica’s head. A camera was brought in to record her actions in connection with her seizures. After a seizure had been captured by the EEG, Tarica was given a dose of Fosphenytoin (Dilantin), a longer lasting anti-seizure medication.
* * *
We thought it hard enough to watch our daughter seize, but the nightmare was just beginning.
Read part three here.