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Friday, February 6, 7 AM – 2:45 PM
Morning brought gloom.
It’s well-known in the epilepsy world that many people can be seizure-free during the day but seize frequently at night. That’s how it has been for several of Linford’s relatives with epilepsy.
But Tarica had slept through the night, without her usual evening dose and without a single interesting event to disturb the quiet of our room. I lay in the semi-darkness and tried not to chew my fingernails.
Shortly after seven, the door opened, and Jayne, back on the floor for her day shift, came in. “Well, Mom, I just got word they want to do the PET scan at eight. Let’s wake her up and get her ready to go.”
“At eight?” I said. “Wonderful. I was scared they would make her wait until eleven.”
Tarica moved on the bed, and her breathing deepened. I leaped up, every nerve alive. “She’s seizing.” I fumbled for the event button as I leaned over her. Jayne turned on the oxygen and fitted a mask to the hose, laying it along Tarica’s cheek.
It was a short seizure but a long relief. This was why we were here, and it felt like progress, although I might sound crazy saying that. Tarica slept through the seizure. When she awakened several minutes later amid the hubbub, she had no memory of seizing.
Jayne returned after updating the doctor. “Plans changed. She’s not going for a PET scan after all. That can happen anytime since she doesn’t need to be seizing for it. We’re going to try for the ictal SPECT scan today since she seized.”
The SPECT scan involves two tests, the ictal SPECT and inter ictal SPECT. (“Ictal” means seizure. “Inter” means between.) The ictal (seizure) SPECT requires a patient to be seizing during the injection of the radioactive substance, and a brain scan is done two to three hours after the injection. The inter ictal (between seizures) SPECT scan is done after the patient has been seizure-free for twenty-four hours.
The SPECT tests measure blood flow in the brain. I know I said some of this before, but physician’s assistant, Brynna, who had a habit of starting every paragraph with “so,” explained it in greater detail. “So. During a seizure, the seizure focus has more blood flow because it’s an area of intense activity. When there has been no seizure activity for a while, the seizure focus actually has less blood flow than the rest of the brain because it isn’t a healthy area.”
Tarica was hooked up to a machine that reminded me of a giant microscope, a coiled line tethered to her IV. Radiology techs loaded a radioactive dye into the machine. She and her EEG readout would be watched every second by EEG techs, and if she had a seizure before three o’clock, they would push a button that would inject the dye into her, mid-seizure.
“Why three o’clock?” I asked.
Because two hours after injection, she would go for her SPECT scan, and the techs that do the scans went home at the end of the working day. If she didn’t seize by three, they would take her off the machine and try again another day. No food or drink until then, because the scan required sedation.
It was going to be a long day.
I managed to slip away and grab a cup of coffee in the pantry down the hall, but since I needed to stay with her and I wasn’t going to eat in front of her, it looked like I’d be fasting too.
She had to stay in her bed, and this did not entirely suit her. But we opened a gift, a doll from a family at church. With the doll came nine little packages, one for each day. Since this was the second day, she opened the package marked “Day #2.” It was a pink gingham dress with a matching bonnet. Tarica set to changing her new baby immediately.
“Her name is Lucy,” she said, all maternal. “It’s good Joyce gave me a dolly, since I forgot mine.”
I didn’t tell her that I knew the doll was coming and had deliberately not brought hers. We already had a truckload of stuff along; we didn’t need two dolls.
But even a doll named Lucy gets old when one must stay in bed, so when a Child Life specialist came in with a few crafts to do, we welcomed her with enthusiasm. As Tarica set to painting a ladybug suncatcher, I noticed that her hands no longer shook. She was off her seizure meds.
Being off drugs meant that the day went fairly well, despite the starvation. She shed only a few tears over having to stay in bed. Although she was restless, it wasn’t hard to find activities to keep her busy.
“I wish the puppies would come,” she said. The nurse had put Tarica on the list to receive a visit from the therapy dogs that made almost-daily rounds.
I was sitting beside her on the bed shortly before one o’clock, when her body tension and breathing changed in an all-too-familiar way. I grabbed for the event button. The nurse came in. “Got it?” she said to the invisible EEG techs at the other end of the intercom.
“Got it,” a voice said.
The dye was injected in a matter of seconds, even before her seizure was over.
I didn’t realize until later how much of a triumph this was.
Tarica was unhooked from the machine and allowed to use the bathroom. The good thing about no food or drink was that she didn’t have to use the bathroom while waiting for the dye injection. If she had gotten the urge prior to injection, she would have had to use a potty chair in front of the camera.
Hospitals can quickly strip you of your dignity, in the name of seeking a cure.
A tech appeared to unplug her EEG box from the monitor in the room, switching it over to a battery pack so it could go with her down to floor two.
“The stretcher will be coming soon,” the nurse said. “They’ll do the scan, and when you come back up, she can eat. Do you want me to order some food so it’s ready when she arrives?”
I had quickly learned that the forty-five minute wait after ordering food usually stretched into an hour and felt like more. Instant food sounded good to me.
Pancakes sounded good to Tarica. Breakfast in the afternoon? The nurse didn’t even blink. “Pancakes it is,” she said, as a member of the transport team arrived with a stretcher and Tarica was loaded unto it. “Do you like syrup?”
On our way to the elevator, we met a pair of therapy dogs, long-legged, slim-muzzled greyhounds. Tarica eyed them with a mixture of joy and trepidation. The stretcher stopped, and the dogs’ owner introduced us to Albert and Layla.
After some coaxing, Tarica reached out and petted the dogs, grinning at Layla’s pink-painted nails. As the stretcher pulled away, she leaned into me and whispered, “I wish they would come to my room.”
“Maybe another time, sweetie,” I said as the transport elevator dinged and opened its doors.
In the radiology department, we were deposited in a holding bay next to the nurses’ station. I had brought a gift along for Tarica to open while we waited, and she was soon playing with a set of magnetic animals. Then an incubator was pushed into the next bay. Tarica nearly fell off her stretcher trying to see better.
“Did you see that little tiny baby?” she asked, peering over my shoulder. She assessed the scene. “I think the baby was in an ambulance, because those people are wearing ambulance clothes.”
I got a lump in my throat. She was right. The cost of such knowledge hurt me, unexpectedly.
“The baby wiggled,” she whispered. “The baby has a pacifier, but it fell out. Do you think the baby is sick? Does the baby have seizures?” She sat back, frowning, and then smiled. “I’m going to pray for that baby, so it gets better.”
A doctor entered our bay and introduced himself. He was a member of the sedation team and needed to go over the logistics of the upcoming scan with me. I was to sign papers saying I understood the risks of sedation. Tarica would be given a medication which would put her to sleep. She would still breathe on her own, and the sedation wouldn’t last much longer than the scan.
As the doctor was winding up his speech, Tarica tipped over backward against the rail. I turned. “What—” I reached for her, lowering her to the stretcher. “She’s seizing,” I said to the doctor.
My attention was fixed on Tarica, so I can’t say what exactly happened behind me and around us, but I felt tension build in the room—maybe because it was building in me. Tarica came out of the seizure and began to cry, her typical response when strangers see her seize. I gathered her to me; she hid her face in my shoulder.
I started speaking to the doctor, when Tarica’s head lolled back, her eyes staring to the right. She was seizing again. Fear clogged my throat. Not again. Not so soon. Not here on floor two, far from a four-layer emergency plan and readily available anti-seizure drugs.
Vaguely, I heard rapid-fire babble around us, including the word stat. I’m not a medical expert, but I knew the word means immediately. More words, something about calling up to floor six, finding out what to use to stop the seizing. One nurse and then another and another joined me by the stretcher. A doctor came, dressed in scrubs. An oxygen mask appeared, but when Tarica came out of the seizure, she pushed it away.
She wept again, a piercing wail of distress. More medical personnel were gathering, six at least and maybe more—I wasn’t counting. Someone yanked the curtain closed around the stretcher.
She seized a third time, her body arching and spasming. She came out of that seizure only to again seize, each time wailing and clinging to me when the seizure was over. I held her close, incredulous. This was the kind of stuff that happened in Dr. Robert Lesslie’s books, not to ordinary people like us.
And she seized again. Five.
I cupped her cheek in my hand and prayed, a wordless cry for help.
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…to be continued…