Nothing much happened on Sunday, which is probably why we enjoyed it, comparatively. You can read about it here.

* * *

Monday, February 9

If I were to title this chapter something besides the boring one above, I would call it “All Because a Little Bug Went Ka-choo.” The Dr. Suess book with this title describes all the awful and improbable things that happened because a bug sneezed.

This chapter contains not a sneeze but a cough—and what happened because of it.

The nurse came in before six that morning to hook Tarica up to IV fluids. Because she would be fasting today, she needed to stay hydrated. Tarica slept through the process, but I did not.

That was the end of my night.

Around eight, it occurred to me that I could slip down to the cafeteria for a quick breakfast—if the nurse was willing to keep an eye on the still-sleeping Tarica. When I asked Erin, she shooed me down the hall. “Go, go, go. She’ll be fine.”

I went. Quickly. When I returned, coffee in hand, twenty minutes later, Erin gave me the OK sign. “Still sleeping.”

“Did you hear yet when the SPECT scan is going to happen?” I asked.

Erin made a face. “She’s scheduled for 3:30.”

“Oh, great. That’s a long time for a little girl to wait for her breakfast.”

When Tarica woke up, she had to take her morning dose of medication. We were back to using her normal sprinkle capsules. Since she had yet to learn to swallow pills, I had always opened them up and poured the sprinkles onto a spoonful of yogurt. But yogurt was forbidden this morning.

“Will she take them with Jello?” Erin asked.

“I think so,” I said. “Is Jello allowed?”

“Not red. Red food coloring is a no-no. What about lemon?”

We tried lemon.

It was just as awful as you might imagine lemon Jello covered with hard white spinkles might be. Tarica nearly rebelled and settled for gagging. Not even a drink of water was permitted to wash the residue from her mouth.

I missed the distraction of food. It’s quite delightful how many hours can be wasted in a hospital ordering food, waiting for food, and finally eating the food. It was a good thing we had visitors coming that day.

Sunny didn’t stay long, but she had time to sit down for a visit with Tarica.

Carmen and Karisa stayed longer.

The last time I remember seeing Carmen, I had been little more than a child. She had been employed by my father, and I admired her. Although she was all grown up back then, she treated an annoying six-year-old kindly.

The years had narrowed the gap between us, and we met with more in common than when we had parted.

While Carmen and I caught up on our lives, Tarica and Karisa broke the ice over books and games.

Tarica wanted to give Karisa a few jellybeans. When she asked for some for herself, I reminded her that she couldn’t eat or drink until after her test. I expected tears, but she swallowed them.

“Shall I put some jellybeans in my pocket, so you can eat them when the test is over?” I asked. I counted out six jellybeans. “Five jellybeans for every year, and one to grow on.”

Tarica grinned and didn’t protest when Karisa ate her seven jellybeans beside her.

I expected Karisa to ask questions about Tarica’s white-wrapped head and many wires, but once the initial awkwardness was over, the two girls were playing and talking as if they had known each other much longer. Perhaps Carmen heard the questions later, but I was grateful for how well Karisa handled unfamiliar circumstances and people.

After they were gone, we had over an hour to while away. Tarica asked me to help her back into bed. “Are you tired?” I asked as I transferred her and her wires.

She nodded and snuggled down with her blanket. Her eyes—it hurt to see the medicated weariness back in them. If we had had to wait much longer, she would have fallen asleep.

Transport arrived to take us down to floor two. I grabbed a small present and a book; one should always be prepared for a long wait in a hospital.

“Do you have the jellybeans?” Tarica asked as we rolled down the hall.

I rattled them in my pocket. “Sure do. You can eat them as soon as you wake up.”

Jaime met us in radiology, her smile warm. We were again deposited in a holding cell to wait. Tarica watched Jaime walk away. “I like her face, Mom,” she said. “And she had Hello Kitty on her shirt.”

“I like her, too.” I wondered what quality made Jaime stand out from the rest of the nurses. It had more to do with who she was than her skills or competency, although she was certainly both skilled and competent. She lacked the gloss and hardness of some nurses. On Friday, when she was taking me to the recovery waiting room, she had gotten mixed up and started off in the wrong direction. She had laughed at herself, not in a disgusted way, but in a genuine—that was it.

Jaime was genuine.

I wished I could sit with her over coffee and ask her about nursing and why she chose it and what it had taught her. (I get compulsions like this quite often, which lead to some dreadfully nosy questions at times.)

When Tarica grew restless, I pulled out the wrapped gift, which she opened with her usual care. It was a Spot It game. I read the instructions and we began playing.

There’s something wrong with me, I think. Despite being five, medicated, and mildly traumatized by recent events, my daughter could beat me in a visual matching game with little effort. I was almost relieved when Jaime returned to take us back to Nuclear Med.

In the scan room, Jaime asked Tarica who should transfer her from the stretcher to the machine. I wanted to congratulate Jaime. She had learned the importance of giving children the power of choice when they are trapped in a situation out of their control. Tarica, who might have pitched a fit about being moved, picked me, and the transfer happened with no fuss.

But she still had some fight in her. None of her IV experiences had convinced her that the nurses meant no harm. Jaime distracted her by asking if she wanted the heart monitor attached to her finger or her toe. Tarica chose her toe.

After some protests from the patient, the team got a syringe attached to the IV and the sedation medication was given. Tarica wept. Jaime mouthed to me over her head, “It burns.” But the pain was short-lived. Within seconds, Tarica was slumping against Jaime, but every time Jaime tried to lower her to the bed, Tarica fought and wailed.

“She’s a tough one, isn’t she?” a nurse said.

“Give her a little more,” Jaime said, her arms around my daughter. “It won’t take much.” (She was actually more specific than that, but I don’t remember what amount she said to give.)

Tarica was soon stretched out unknowing on the bed. They moved her up so that her head fit snugly between two padded supports. An oxygen mask was put over her mouth and nose, and towels tucked around her face ensured she wouldn’t move. The scan technician pulled a warmed blanket over her, followed by her precious Pooh blanket. Over this, he drew thick black straps to hold her down.

He punched buttons on a touch screen. The bed slid forward, and two large square plates moved into place on either side of Tarica’s head.

“Vitals look good,” Jaime said, and with another punch, the scan began. The machine hummed and purred, and every minute or two, the two plates moved a few inches farther in a methodical rotation around her head.

I should have been horrified at the sight, but I confess I was fascinated by this opportunity to observe an unfamiliar world. Besides, horror would have only gotten me ushered from the room. Perhaps the techs were accustomed to some kind of reaction. They had pulled a chair over for me beside the machine, and when I stood up, the scan tech eyed me.

“You okay?” he asked, in a manner that indicated he feared I wasn’t.

“I’m fine,” I said. “Just need to stand for a little. I’ve been doing a lot of sitting these days.”

“Can I get you anything? Something to eat or drink?”

“I’m fine,” I said.

“It isn’t any trouble,” he insisted.

I relented. “Water would be nice. I haven’t been eating or drinking much today because she couldn’t.”

He brought me water and pretzels and crackers. Since they were available, I ate the pretzels. But it felt wrong. My daughter strapped unconscious to a machine that looks like it’s about to consume her and I’m there eating. Sort of like the Romans feasting in the Colosseum while the Christians burned.

The scan took about thirty minutes. A few minutes before the end, the doctor overseeing the scan said, “The last two minutes are a modified CT scan. We need to move away during this part of it.”

Jaime, the doctor, the scan tech, and I moved behind the glass wall enclosing a corner of the room. We watched as the bed slid further into the machine, which whirred and clicked. The bed jerked as it moved again and then again.

“One minute to go,” the tech said, and then—

Tarica coughed. Her hand came up to her face. The tech froze.

The team spoke rapidly, quietly to each other. I caught the doctor’s words. “You mean we’ll have to do the whole scan again?”

The tech punched more buttons and the machine quieted. “She has to be in the same position for the SPECT and the CT. She moved when she coughed. We have to start over.”

The room became busy. More nurses came in and stood in consulting knots. Two doctors in navy jackets with “Sedation” embroidered on them appeared and started a deep discussion with the original team. From what I overheard, they were trying to figure out what and how much to give Tarica. Her original dose was no longer effective; she coughed again and moved during the hubbub, although she didn’t wake up.

The team talked in numbers and names I didn’t understand, even arguing a bit about what would work. Jaime worked out some math on a paper, and they discussed it some more. Finally, everyone was nodding. The medication was procured and given. Jaime adjusted the oxygen mask so it was no longer pinching Tarica’s face. The mask had left red marks on her cheeks. I wondered if that was why Tarica had stirred.

I thumbed out a few texts with a request for prayer. Not that I didn’t trust the medical doctors to handle the situation, but the Greatest Physician is our family doctor, and I prefer when He attends my daughter’s bedside. The more people petitioning Him on Tarica’s behalf, the better.

The scan began again. One of the sedation doctors, a crinkly-haired woman who reminded me of a lively, strong-minded terrier, which is meant as a sincere compliment, said to me, “How can you be so calm? If this were my daughter, I’d be flipping out.”

That wasn’t all she said. I heard her talking to the rest of the team about Tarica’s case. She said, “I’m going to see if we can do the MRI right after the PET tomorrow. No point in making her starve for two more days. The PET dyes won’t interfere with the MRI, so there’s no reason why not.”

I thought maybe I wasn’t hearing correctly above the noise of the machine.

And then I wanted to hug her, bless her, get down on my knees and beg her. Oh, to go home tomorrow. I almost forgot about the scan in my elation.

As the scan progressed, the tension built in the room. I caught the team exchanging glances, studying Tarica. When we moved behind the glass for the last two minutes, I could almost see the intensity pouring off them.

Jaime said, “If she moves, I’m going to cry.”

The sedation doctor said, “If she moves, I’m going to throw up.”

The scan tech, above the hysterics of women, stood rigid, his gaze jumping from the screen to Tarica and back.

I concentrated on praying while the bed jerked and moved in its final throes.

The bed retreated from the mouth of the machine, the machine throttled down, and the tech drew a deep breath.

“It’s done?” the doctor asked.

The tech nodded gently, but there was no mistaking the relief in his face.

The rest of us were not so inscrutable with our joy.

As we filed out of the corner, Tarica moved on the bed.

“That was too close,” someone said.

Tarica’s return to consciousness, once premature, was now slow. She was transferred back to a stretcher, and Jaime took us to a small recovery room. The sedation doctor stopped in briefly to check on us and again mentioned something about trying to schedule the PET and MRI for tomorrow.

As soon as Tarica was fully awake, she ate jellybeans and slushie, blue this time.

Back in Tarica’s room, we ordered supper. I ordered my hopes to calm down, but knowing we might go home tomorrow, I could think of nothing else.

Just think, I said to myself as we silently plowed through our food. If she hadn’t coughed, this possibility might never have come up.

But I said nothing of it to Tarica. I didn’t want to disappoint her if it didn’t work out.

The story of our Saturday can be found here.

* * *

Sunday, February 8

There are no Sundays in a hospital, other than a lack of scheduled testing and a non-denominational chapel service for all those interested and I wasn’t. Tarica and I created our own service. With half the congregation being five years old, plus missing a minister to read the text, we settled for Sunday school.

I had saved a specific gift for this day. Someone had given us a pair of dry-erase activity tablets, one on David and Goliath and one on Noah’s Ark, and a pack of markers. (Thank you, Ann!) Tarica picked Noah’s Ark, and we had ourselves Sunday school in a hospital bed.

When class was dismissed, Tarica opened the dolly package marked “Day #4.” Pleased to find socks, a pair of tights and a bottle, she promptly gave her baby a long feeding. “She was very hungry.” With serious eyes. “It’s good I have a bottle now.”

Shortly after noon, Linford, Jenica, and Micah arrived at our door, bearing a packed lunch from my mom. Home-cooked food! and Mom’s chicken corn noodle soup at that. My stomach thought it was standing at the gates of Paradise.

While I was in the family pantry heating up the soup, a woman walked in. I recognized her as the mother of the other child in Phase One. (Children’s Hospital usually has two patients simultaneously going through Phase One.) I asked her how it was going.

No seizures for her son. Nada. None. Zilch.

We talked until the soup had cooled in the microwave and she needed to hurry back to her son. As I re-reheated the soup, I considered her words.

She had so much to say about thinking positive, being strong, not letting herself get discouraged, making the best of it, and so on. It hurt to hear her, and I wished I had been able to speak more clearly of trusting God. But our daughter had seized and her son had not. The victor must be careful how she speaks of courage to one still in the battle.

I had told her I would pray for her and her son. That would have to be enough.

I carried the steaming soup back to room EP4 where we ate in the expected chaos of not enough chairs or table. But chaos was a small price to pay for family togetherness.

Tarica’s new treasures kept everyone occupied and quiet, other than sporadic outbursts from a small man who wanted to try out all the buttons in the room.

I told Linford the latest news from the doctors. “It looks like we might be able to go home early. We still need to do the inter ictal SPECT, the PET, and the MRI. They can do only one test per day since the dyes used in the scans would interact with each other. Brynna said if all goes well, we’ll be done on Wednesday.” I rescued the event button from Micah. “They’re starting her back on her medication tonight and will build her up slowly, so she’ll be on her regular dose by Wednesday.”

Wednesday. Yet one more potential miracle, all because Friday had gone so well.

“Did they see enough seizures?” Linford asked.

“The doctor said he wouldn’t mind seeing a few more,” I said, “but they’ll start her back on medication tonight regardless. If the boy in the next room has had no seizures, and Tarica had six plus the cluster down on two, then I guess it could be much worse.”

While Tarica was preoccupied with her siblings, I said to Linford, “I am worried about the next three days. All three tests require sedation, so she’ll need to go without food or drink.” I rubbed my hand over my eyes. “She’s been a real trooper, but going hungry for three days straight would test the hardiest soldier. It also means I won’t be eating either.”

“Carmen’s coming tomorrow, isn’t she?” Linford asked.

“I think so. She said she’d call me tomorrow morning with specifics. I hope we can make their visit work with the scheduling of the scan. It will help to distract Tarica from her empty stomach. I don’t know when the scans will happen until the morning of, although Brynna told me that MRI is always done on the last day at the end of the day.”

Perhaps Micah wanted to punish me for abandoning him at Grandma’s. He rejected much of my affection, preferring instead his father’s. When it was time to go, he marched out of the room and down the hall ahead of Linford and Jenica, with scarcely a backward glance.

I ordered a late supper for Tarica—no food or drink after midnight—and what was left of our day disappeared. Because of her recent late nights, I hoped Tarica would fall asleep in good time. But the night nurse came in shortly before nine with an IV pole and announced she was hooking Tarica up for her first dose of medication, this one to be given by IV.

Tarica wasn’t having any of it. No one was getting close to her IV port, no one. I hated this, hated the flat-out bribery I resorted to. It defied all my parenting principles. “We’ll open a gift after you’re hooked up,” I said. “Which one do you want?”

None of them.

Doing this in front of a witness made me self-conscious, awkward. When the nurse was called away briefly, Tarica and I talked unhindered, including one grumpy complaint from her: “Why is she so loud, Mom?” This nurse was a little brusque; without her presence, Tarica’s resolve thawed. When the nurse returned, Tarica submitted to the flushing out and hooking up with only minor protests.

“How long will this take?” I asked.

“About an hour,” the nurse said. “It’s a slow drip.”

After she left, we opened a gift and tried to pass the time. Tarica’s IV was hurting her, made worse by her tiredness. I soothed and distracted; I may have even resorted to a second gift.

The nurse returned just before ten to unhook her. She frowned and examined and reexamined Tarica’s IV port.

“Is there a problem?” I asked.

“It’s leaking. Doesn’t look good. I’m going to get an IV tech up here to replace it.”

No.

The nurse left to place the call. When she came back, she said, “It’s going to be awhile till the tech gets here. They have a number of patients on the list.”

But the day had been long enough, and Tarica succumbed to sleep sometime around 10:40. I tried to stay up with a book, but when I could barely keep my eyes open, I gave in and went to bed myself.

But I couldn’t fall asleep, tired as I was. I kept visualizing the battle to come, the struggle to find a vein, the tears we both would shed.

The door opened at quarter past midnight, the tech full of apologizes for making us wait. She was worth the wait. Tarica, half-sleep, wept only a little, and the needle found a good vein on the first try. Perhaps the tech succeeded because Tarica was not fighting.

My imagination had run away with me this time. But being wrong once didn’t suppress my concerns for the morrow. I prayed the scan would happen sometime in the morning.

“Not at the end of the day, Lord,” I pleaded and wished that nurse wouldn’t talk so loud outside our door.

Read about the first part of our day here.

* * *

Friday 3 PM until early Saturday morning

Someone entered our curtained alcove holding a syringe. They had decided to give her Versed, which is both an anticonvulsant and a sedation medication. Tarica was injected with the drug, and when she didn’t stop seizing, injected with more.

Finally the seizing stopped.

When everyone was reassured that Tarica had stabilized, the crowd drifted away while the doctors consulted among themselves. Finally, the original sedation doctor spoke to me.

This cluster of seizures had changed their plans. With sedation, patients breathe on their own. But during a seizure, Tarica could not protect her airways, and if she would seize while she was sedated, it could be dangerous. They believed the safest choice for Tarica was general anesthesia, which includes a breathing tube.

The doctor in scrubs who had been by the stretcher during the seizing explained what was involved with GA (general anesthesia) and produced papers for me to sign. Soon after, we were taken to Nuclear Med, where the SPECT scanner waited. Tarica was transferred from the stretcher to a narrow bed which fed into the machine’s mouth. She seemed disoriented, likely from the seizures and the medication, and did not protest too much.

At this point, I was led away. Although I could have stayed with her for sedation, I was not permitted in the scan room for GA. Perhaps it’s for the best. Do any parents want to see a breathing tube worked down their child’s throat?

Jaime, a radiology nurse wearing a pink shirt and a warm smile, had been the first to greet us when we arrived on floor two. She had been with us during the drama. Now she took me to a nearby waiting room. When I mentioned that I hadn’t eaten yet that day—and it was after three—she showed me how to get to the cafeteria and back.

In the cafeteria, I looked around blankly. Too many choices. If only someone would give me my food without my having to decide what to eat. Even choosing my drink required three minutes of concentrated effort.

I took my food to a table by the courtyard windows, just down from the table where I had sat with my parents and sister eleven months ago, waiting for Tarica to return from her MRI. Even though I could do nothing for her now, it felt wrong to be so far from her, eating and drinking, when she was hungry and helpless. And alone. What if something went wrong, and they couldn’t find me in the waiting room?

I ate quickly and returned to floor two.

In the waiting room, a woman asked me if I’m Amish, and I said no, I’m a Mennonite. She then wanted to know the difference between Amish and Mennonites, and before I knew it, Jaime came back.

“She just came out of the scan room,” Jaime said, “and she’s in recovery. I’m taking you to the recovery waiting room. They’ll come get you when she wakes up.”

She escorted me to the proper room, gave my name to a receptionist, and wished me the best.

I didn’t have to wait long. When I was taken to the recovery room, Tarica was awake and, thankfully, calm. The breathing tube had given her a barking cough and sore throat. I fed her red slushie and talked with the attending nurse while we waited for transport to escort us back to floor six.

“Where’s the doctor in the pink shirt?” Tarica croaked.

I spooned slushie into her mouth. “Her name is Jaime. She’s a nurse, and she had to get back to her work. She doesn’t work in this room.”

Back again in the safety of Room EP4, I presented Tarica with pancakes drenched in syrup. She barked a cough and asked for more slushie. Don’t want pancakes. She tried her grape juice. Hurts my throat. She pushed it away.

“Eat a bite of pancake.” I offered a loaded fork.

She turned away. “I want more slushie.”

Her slushie was nearly gone, and she needed to eat more than colored sugar water. But she turned up her nose at everything on her tray.

She and I were still debating over her food when Jayne came in. I said, “Tarica’s not interested in her food, even though she hasn’t eaten all day.”

Jayne nodded knowingly. “General anesthesia can do that, and her throat hurts from the breathing tube.” She turned to Tarica. “How about some ice cream?”

Tarica leaned back her pillow, a queen surveying her subjects—or was she just a mixed-up little girl? My mother-heart chose the latter. “Do you have banilla?” she asked.

“We sure do have banilla,” Jayne said.

Tarica had slushie, ice cream, and a few bites of pancake for supper. Nutritious.

The rest of the evening passed by pleasantly. No, beyond pleasant—it was an oasis of joy.

Tarica, with the seizures behind her for the moment and without medication in her veins, was the little girl I remembered from a year ago. Gone was the edge, the bite, the defiance, the glazed eyes. She was the most lovable creature on earth that night, and my heart ached because this sweetness was short-lived.

I have written of her fighting needles. I have written of her seizing. I did not cry with the writing. But now, remembering our Friday evening, I cannot hold back my tears. She was my Tarica again, so briefly, and it was bitter and sweet swirled together in the cup. I drank of it deeply.

I cannot remember what we did that evening, neither did I take any pictures, unfortunately. I can recall only the joy. And one conversation.

“Are we doing tests tomorrow?” Tarica asked me.

“Nope, no tests. Some visitors are coming to see you. And we can eat breakfast, lunch, and supper. Won’t that be fun to eat whenever we want to?”

“I want to eat tomorrow,” she said and grinned her impish Tari-grin. “All day.”

This photo was taken another night, the first time she wore her Strawberry Shortcake hospital gown, a gift from a little friend who also has seizures.

It was an evening I didn’t want to end.

My sweet Tarica must have felt the same way. She beamed her way past nine o’clock, bounced through ten o’clock, and kicked her blankets over eleven o’clock. It was nearly 11:30 when I stepped out of the room to find the nurse. (I hate using the call button, especially at night.)

Tarica’s night nurse, Kalani, looked up from her desk. “Do you need something?”

“Yes, I need something to calm this girl down. What is wrong with her? She won’t go to sleep.”

Kalani smiled. “That’s a common reaction to general anesthesia. And you’re never going to believe the cure.” She paused a beat. “Caffeine. Would she prefer Mountain Dew or Pepsi?” Seeing my raised eyebrows, she said, “We do it all the time, and it works.”

“I’ll take your word for it,” I said. “She likes Pepsi.”

For the record, Kalani was right. Tarica was sleeping in about forty minutes.

I climbed onto my hard sofa bed and tried to go to sleep. Just about the time I was wondering if the leftover Pepsi would cure my insomnia, Tarica seized. I leaped up and punched the event button. Kalani came in. Since Tarica slept through the seizure, there was nothing to do but go back to bed when it was over.

Ten or fifteen minutes later, she seized again. Again the button, again Kalani. She pulled the blanket off Tarica, whispering as she did, “So the camera can record her movements in a seizure.”

But two seizures this close together was too much. Kalani returned with a syringe. “I’m giving her a dose of Ativan. The doctor doesn’t want her seizing more than twice in one hour.”

Seizing in Phase One is a delicate process. The doctors want to see seizures, but not too many, lest they do damage. Medication is taken away and given accordingly. Every patient has a customized emergency plan with several drugs on hand to stop a seizure that goes longer than a few minutes, or to prevent too many seizures in a short time. When Tarica had her seizure cluster down on floor two, that plan and those drugs were not quickly available, which is why her seizures were not stopped sooner.

Quiet resumed. I finally fell asleep. I thought I could never sleep through a seizure, but I missed the two that happened around 2:30, waking only when Kalani came in with a second dose of Ativan.

That ended her seizures and our day.

But not the story. I’ll be back soon with more.

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.