Read the account of Day 1 here.

* * *

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?”

Tarica did.

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.

* * *

…to be continued…

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.

See that grin? She just discovered the buttons on her bed.

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.

Too restful.

* * *

The story continues on Day Two, Part One.

What is involved in Phase One of brain surgery?

I don’t know all the details, not like I will in a few days. But I have been doing some reading and research on Phase One so I can look intelligent when doctors start slinging around words and acronyms like isotope and PET and magnetoencephalography. With all this information backing up in my brain, I need to sort through it by writing out what I currently know.

If I keep the technical simple, perhaps you will not mind if I share it with you.

First, a word of explanation: Our daughter will be entering Phase One of brain surgery this week, but this doesn’t mean she is going for surgery. Only one-third of all patients who enter Phase One qualify for Phase Two, which is the surgery itself.

The hospital sent us a packet of information on the tests Tarica will likely face during her stay. This shed more light on what to expect, although the information was general, not specific to her case.

Here is what we know:

Video EEG

During her stay, Tarica will be continuously monitored on Video EEG, except when she is undergoing other testing or needing a bathroom break. This means she will have 26 button-shaped electrodes glued to her scalp, which are attached to a box which is in turn hooked up to a machine. She will be confined to her room, specifically the bed and chair.

A parent is required to be with the patient at all times. Whenever Tarica has a seizure, I am to push a button to alert the monitoring staff and to create a marker on the test recording for review purposes.

MRI

She will have at least one MRI, a test which takes picture-like images of the brain at different angles. Because the patient is required to lie still for a long time, Tarica will likely be sedated for this test, which of course means all kinds of lovely food and water restrictions.

PET

The PET scan observes the metabolism of brain cells. A radioactive substance (“completely safe and will not harm your child”) containing glucose is injected through an IV. Tarica will need to rest quietly for 30-90 minutes, until the substance reaches her brain. Once in her brain, the glucose in the substance binds with the brain cells. The PET scanner, a large doughnut-like machine, can now read brain cell activity because it is lit up with this clingy radioactive stuff.

Seizures create areas of intense activity, so no doubt it would be helpful if Tarica would have a seizure during this test. Is that too much, too strange to pray for?

SPECT

SPECT imaging detects changes in blood flow within the brain. During a seizure, blood flow is highest at the point where the seizure originates.

This test is taken twice, once when there has been no seizure activity for some time. The second test is taken after a seizure occurred. A radioactive substance (“safe and will not harm your child”) is injected during a seizure, and when the test is taken a few hours later, it reveals the blood flow in the brain at the time of injection.

I don’t understand how the test can be taken several hours later and be accurate, but I’m sure they know what they are doing.

MEG

I don’t know if a MEG study will be done this time. We were given information on it, so it’s possible, but the MEG imaging machine is located at a different hospital.

A MEG test uses sensors to form an image of magnetic fields within the brain. For once, no radioactive substances are involved. It reads the brain in ways similar to EEG. Electrodes are attached to the scalp, and then the patient is strapped down and slid into a machine. Unlike other tests, no one can be in the room during this scan, which takes about an hour.

I’m not seeing this test as doable for Tarica unless they sedate her. Between her claustrophobia and her fear of being alone with (and inside) a big machine—there’s little chance she’ll accept it quietly.

Other tests

There are other tests, not all of them happening on this stay. A language evaluation will be done while Tarica is on video EEG. This test takes several hours and may require more than one session. A psychiatry evaluation will be completed during this stay, which is largely to determine the emotional stability and coping abilities of the patient, and to discuss fears and concerns (both hers and ours) about what may lie ahead.

A neuro-psychology evaluation will assess Tarica’s developmental, memory, cognitive, language, and attention abilities. This test is not done during this stay, according to the information I have.

Last week, I received a call from a nurse at Children’s, the first of several, she said. The specifics begin. Starting today, I am cutting Tarica’s medication doses approximately in half. This is ensure that she is seizing frequently by the time she is admitted.

It’s a recognized fact that patients who are seizing regularly will sometimes stop seizing upon admission to a hospital. I could spend a lot of time worrying about this possibility, but I’m trying to trust God with those details.

I’m trying to trust God with a lot of details, but there are some details—like the packing and preparing—that belong to me. The next few days will be busy.

Not that I haven’t had help. I have been astounded by generosity over and over again recently, but that’s another story.

Thank you for allowing me to write this. I think I shall be able to remember now what a PET scan does and that there are two SPECT tests.

Sometimes the biggest preparations are the mental ones.