Phase One of Brain Surgery: Day 3

Read the previous evening’s adventures here.

* * *

Saturday, February 7

I woke too early, feeling like I hadn’t slept.

While I had uninterrupted quiet to think and pray, I read my Bible and did some writing. No one disturbed us that morning, so Tarica didn’t stir until 9:00. When she awoke, we ordered breakfast, and then I got her up and dressed.

I’m not sure when I first noticed her fidgetiness. She was decidedly not the girl of the previous evening. She wiggled and squirmed, a body in constant motion, and her attention span was—well, she had little to none. Her orneriness had returned, too.

But why, if she wasn’t on medication?—and then I remembered the Ativan. Two doses within two hours. I remembered also her behavior in the hospital eleven months ago. We had blamed Dilantin—and certainly Dilantin had caused the hallucinating and fighting—but it looked like Ativan might have contributed to her agitation and inability to relax.

Tarica made a nice-sized dent in her breakfast and was still nibbling at it when our visitors arrived.

My sister Cassondra and three of her friends drove out to spend a few hours with us. Never was I so happy to see a crowd. (Yes, for introverts like me, four is a crowd.) They helped to entertain Tarica and gave me adults without badges to talk to.

I can see the photo in my mind: four smiling young women gathered around a small girl. It’s the photo I didn’t think to take and wish I could share with you now.

And if you will allow me to insert a mini-sermon here: Never hesitate to give what you can. The Lord can multiply it in the heart of the receiver until it fills every crevice with gratitude.

I deluged our visitors’ ears with more information than they likely wanted or needed; they listened politely and even asked a few questions. It felt delightful to unload all that was rabbiting around in my brain from the last two days.

Like this: In the last month, Tarica had complained about her eyes. Her vision would blur, and she couldn’t see for a while. When I had mentioned this to the PA, she said it was likely seizure activity, a simple partial seizure that didn’t spread to affect more of her brain. Her seizures have always affected her vision. In fact, Tarica told us once it’s how she knows she’s going to have a seizure: She stops seeing.

As I was speaking, Tarica said, “My eyes are blurry now, Mom.”

I looked at the event button. Should I push it? But what if it wasn’t a seizure?

Feeling self-conscious, I stepped outside the room in search of a nurse. None was in sight. Sheepishly, I pressed the call button.

When the nurse came in, I explained what had happened. She said to push the event button for any future episodes. As if I expected any other answer. Why had I bothered asking?

While our guests were with us, we received two more visitors that made Tarica’s eyes shine. Her anticipated canine friends were no sooner in the room than they were crowding Cassondra, who drew her skirt about her, rejecting their attention.

“I don’t know why it is,” she said, “that I can be in a group of dog-lovers, and the dogs always find me.”

The Labrador Retrievers, one yellow, one black, cheerfully unsuppressed, soon moved on, and once Tarica recovered from her initial shyness, she petted them.

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After our visitors—human and canine—left, the hours dragged. Nothing was planned for Saturday or Sunday, beyond waiting for a few hoped-for seizures. We opened another gift, played a few games, read a few books.

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In his daily round, the doctor said, “Her seizures travel so fast within her brain, it will be difficult to determine the starting point. Ideally, it would be nice to see three to five more seizures, but we may have to settle for what we have. General anesthesia tends to suppress seizure activity, which is why we use it only if absolutely necessary. We are fortunate to have gotten the seizures we did.”

“What about the seizure cluster down on floor two?” I asked. “Will you be able to use that?”

“Maybe, maybe not. The battery-powered EEG is often not as clear as it should be.”

After he left, I thought about his words, piecing them with other information I had been collecting.

If general anesthesia generally suppresses seizures, then her four seizures last night were unusual.

I had decided, going into this hospital stay, that if anything out of the ordinary happened, I was going to attribute it to God. Why not see God in the unusual? Dare I call the unusual not a coincidence but a miracle? Of course I could, no matter what others might call it. God makes even the commonplace a miracle. Look at the unfolding of a crocus, the first squall of a newborn, the sinner’s prayer of repentance. Ordinary events, all of them, and extraordinary miracles, all in one.

If I couldn’t lay claim to miracles in Room EP4 at Children’s Hospital of Pittsburgh, then I had no business praying to the God Who provided them.

And if I was looking for miracles, I didn’t have to search long. Seizing in Phase One is in itself worth celebrating. Several nurses told me that many patients who seize daily at home won’t have a single seizure during a two-week hospital stay. “The parents can’t believe it.”

I would claim that miracle, too, the miracle of seizures.

And not only seizures, but perfectly timed ones, as well.

Did you know it usually takes until the sixth or seventh day of Phase One to capture a seizure while hooked up to that machine for the SPECT scan? The patient has to seize on a weekday between the hours of seven and three, and seizures are not that easy to schedule.

Sometime over the weekend, the doctor told me, “We have the hardest test behind us. You’re on the downhill stretch now.”

I did not know, when Tarica had that seizure just before one o’clock on Friday afternoon, the second day of her stay, that a miracle was happening, but I knew it now—and my heart nearly burst with thanksgiving. I wished I could personally thank everyone who was praying for us. If only they could stand here and see the miracles happen.

I didn’t want to be anywhere else in the world at the moment. I had a front-row seat, and I was afraid to blink, for fear of missing something.

Tarica had no seizures that day, and it took her until after ten to fall asleep. With her constant fidgeting, I felt as if I had been on a trampoline all day, but though my senses were battered, my heart was quiet.

God was at work. I could rest in Him.

Phase One of Brain Surgery: Day 2, Part 2

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.”

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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.

Phase One of Brain Surgery: Day 2, Part 1

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.

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“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.

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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.

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“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…

Phase One of Brain Surgery: Day 1

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.

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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.

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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.

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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 that the buttons on her bed do all kinds of fun things.

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.

A Sneak Peek at the Ending

I’ve been wrestling over what to post here.

Part of me, the storyteller part of me, wants to share the story as it happened, saving the best part for last, allowing the miracle to soak in rather than drenching you with it.

But many of you have faithfully prayed for us, and you deserve to know that your prayers have been more than answered.

As I write this, I’m sitting at my dining room table, watching the birds crowding the feeder. Upstairs, a little girl sleeps in her own bed.

We are home.

Our ten days shrank to six, because Tarica’s seizures happened at the right time and the doctors were able to collect enough information to release her. Tarica’s doctor called it “very uncommon.”

We serve a God of the uncommon and miraculous, and my heart is saturated with gratitude and praise.

Isn’t this amazing? Rejoice with me, with us. God has been so good.

I’ll still tell you the story, because there are many moments of grace in the details and I want to share them with you.

One shadow spreads itself over my joy. We have been given a miracle, but many still wait for theirs. I’m thinking especially of Juliann, a reader who left a comment last week about her twin baby boys in the NICU. I don’t know Juliann personally, but a few of my friends are friends of hers. Juliann is still waiting for a miracle. One of her sons is not doing well, and they are waiting now for some test results.

Will you pray for Juliann’s babies?

Our God has yet to run out of miracles.

A Brief Update

We are entering day six of our hospital stay. Tarica is sleeping as I write this, and I hope she stays asleep for a long time. She has a PET scan at 3:30 this afternoon and won’t be able to eat or drink until sometime after that. The more hours she sleeps through her fast, the easier it will be.

Behind us are five days of weariness and wonder. Although we hit a few bumps in the road, God has been clearly directing our course. Our prayers, your prayers have been heard and answered. It gives me goosebumps just thinking about it.  I can’t wait to tell you all about it.

But it’s a long story, still to be fully lived and written—and of course, I want to tell it properly, without spoiling all the surprises now. Here at the hospital, I barely have five uninterrupted minutes to think, much less write. Although Tarica is doing very well, she is still only five and needs almost constant attention and supervision. This quiet time in the morning is my only break, if I can wake up enough to enjoy it.

God has been so good to us. Thank you for your prayers.

I’ll be back with the beginning of the story sometime soon.

Throwing Like a Girl

At this time tomorrow, Tarica and I will be setting up house inside the walls of Children’s Hospital of Pittsburgh.

I feel as taut as a piano wire.

Last night, I read and reread that familiar verse, trying to saturate myself in its truth: “Casting all your care upon him, for he careth for you.” (1 Peter 5:7)

Throw all your anxiety on the Lord, Stephanie.

I’m trying, I’m trying, but it keeps falling short of its goal.

Stress has always robbed me of my sleep and my appetite. But I actually slept last night—except for a brief, wakeful watch in the hour of three—and that is a minor miracle. Now I just have to get through breakfast, lunch, and supper.

Tarica is looking forward to her hospital stay, but I suspect that has something to do with the air of Christmas around here. Such a sneaking around with mysterious parcels and boxes she isn’t allowed to open and packages arriving in the mail. It’s enough to drive any little girl into spasms of curiosity.

But she doesn’t have enough spasms otherwise.

My husband is an appliance repairman. He has lost count of the times he has gone out to a customer with a clunking washer or leaking dishwasher that runs beautifully while he, the repairman, is there. And haven’t you done this, too? You finally set up that doctor appointment, but the symptoms eased or disappeared shortly before you got there.

Despite having her medication cut in half, Tarica isn’t seizing enough, and tomorrow she is to be hospitalized to study her seizures.

It’s embarrassing to admit how much this worries me. What if she doesn’t seize enough for the doctors to locate the seizure focus?

A month ago, I would have been wild with joy to be in these shoes. Now, I am just sick with worry. A lot of time and inconvenience and prayer has been invested in these ten days at Children’s. A lot of money will be, too.

And what if she doesn’t seize?

(Okay, maybe a miracle did happen, maybe the seizures are gone, her epilepsy healed—I’m not discounting this as a possibility. But the not knowing eats at me.)

I’m trying to throw my worries on the Lord, but I have a terrible arm. I crave your help.

Pray for us.

Pray that Tarica would seize enough to give the doctors the needed information. Pray that her mind and spirit would be calm even if her brain isn’t.

Pray for Linford and me, that we would be strong and that our faith would not waver. Pray that I will be able to eat and sleep.

Pray for safe travels as Linford drives back and forth between his divided family.

Pray for the doctors, that they would have wisdom and discernment.

Pray a blessing on those sacrificing to help us.

Pray as the Lord leads you.

Pray His will be done.

Pray.

Family Photo Closeup

Several postscripts:

The photo above was taken this past weekend by a talented friend, bless her heart. She did a fabulous job with limited resources and time. (Jenica is seven; Tarica is five; Micah is twenty months. Dad and Mom are not as young as they used to be.)

I don’t know if I’ll be able to post updates while at the hospital. It all depends on… everything. Sometimes it’s difficult to write of an event while in the middle of it. Also, if Tarica goes ballistic, I’ll need to concentrate on her.

And thank you for praying. It’s not from lack of prayers that I feel anxious; it is my own weakness.

Have not I commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest. (Joshua 1:9)

Preparing for Phase One of Brain Surgery

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.

Thoughts on a Deadline–or Two

There is so much to do.

Time is running away from me. The deadline is imminent. Soon, it will not matter that I’ve not completed my to-do list. We will go, regardless of whether we feel ready or not.

I’m trying to prepare my children. We talk of it every day, and I assure them that, although we don’t know exactly what lies ahead, this does not have to be scary. We are trusting God to care for us. He will never forsake us.

I think of it all the time. I filter my plans and actions: Does this help me get ready, or is it a distraction? Unfortunately, this does not prevent me from accidentally distracting myself anyway. I must be more focused in the days to come.

When I look at all that remains to be done, I panic. The last few weeks went by too fast. What did I do in January? It’s gone already, and I’ve barely started.

On Saturday, I was reading over the papers that outlined what to expect. It was too much, too overwhelming. I have no idea how we will manage it. I speak to my children of trust, but my own heart trembles.

This will change us, as all experiences do. I’m not sure this pleases me. I like who I am now, who we are now, and I fear being different.

And what if the answer, the result, breaks our hearts? Oh, God, let it not be so.

I’m talking about preparing for our daughter’s hospital stay.

But I could be, should be, talking about preparing for eternity.

I pray I will be prepared for both when they come.

Defining Epilepsy Terms and Our Situation

It is my goal to share our adventures with epilepsy by telling it as a story.

I believe in the power of story to change lives and touch hearts. Story is more compelling than bare facts. However, story limits me at times. I can tell you only what actually happened; I cannot invent stuff in order to make a point. Also, a good story will rarely stop halfway through and give a lecture on various facts to educate readers or to remind them of what happened a few weeks ago.

I dislike stories in which the characters talk to each other in order to talk to the reader—you know, when they say things that they both already know and wouldn’t say to each other in real life. If people did this in real life, one of them would say, “Duh. I was there. You don’t have to tell me all about it.”

The writer is doing this to tell or remind the reader of past events. It’s an easy trap for a writer to fall into.

In a book, a reader’s questions are more easily answered. If you can’t remember what exactly happened at the beginning, you can flip back and reread it. Here, on this site, it’s a little harder. And some of you have not been here since the beginning.

For these reasons, I’m going to give you some answers to the questions I’ve been receiving, online and off. Here are the facts. Not much story today.

What is a seizure?

The simple answer: haywire electricity in the brain. The complex answer? Uh…I’m sticking with the simple answer.

Everyone has electrical activity in his brain. A seizure is when those electrical signals go crazy.

If someone has a seizure, does that mean it is epilepsy?

Not necessarily. Fever, illness, or head trauma could provoke a seizure. Epilepsy is not diagnosed until someone has had two or more unprovoked seizures.

What kind of seizures does Tarica have?

A quick rundown on seizures: There are two main types of seizures, generalized and partial.

Generalized seizures mean both sides of the brain are involved from the start of the seizure.

Partial seizures begin in a specific area of the brain and remain there.

Complex partial seizure bridge the gap between the two types. They begin in a specific area and spread to involve more of the brain, sometimes becoming secondarily generalized.

The doctors believe Tarica has intractable complex partial seizures. The upcoming tests will reveal additional information.

I can’t define seizures more than this without getting confusing and wordy. Because each brain is unique, it is difficult to group seizures neatly into categories. There is overlap between the types.

What are intractable seizures?

Seizures which cannot be controlled by medication are known as intractable. They are also called “refractory” or “drug resistant.”

What do her seizures look like?

With no warning, she falls over backward. Her muscles are drawn tight, and her face is contorted. For the first part of the seizure, her arms and head twitch convulsively. Then her back arches and the convulsions spread to involve her whole body. Her head will tilt back until it seems it might break off her neck. Her eyes are wide and staring. While she does not wholly lose consciousness, she is not able to communicate or respond during a seizure.

The seizure lasts somewhere between 30-60 seconds. She is exhausted after it is over.

Why did her seizures change?

Back in March of last year, Tarica’s seizures lasted 10 seconds, maybe 20, at the most. Only her left arm and head seemed involved in the seizure. She did not lose her balance, and she did not convulse.

The tail-end of a seizure March 9, 2014

The tail-end of a seizure – March 9, 2014

 

By the end of the year, her seizures had escalated to what we are seeing now. Why? I have no idea. In my research, I’ve stumbled across repeated assertions that seizures do not usually grow worse over time. Why have hers? This is a question I want to ask the epileptologist.

What is an epileptologist?

It is a neurologist who specializes in the treatment of epilepsy, especially involving methods other than medication, such as diet and surgery.

How is Tarica doing now?

She is doing very well. In the two weeks since her big seizure, all of her seizure activity has been confined to nighttime. We are praising the Lord for this break.

The doctors will likely lower her medication dosage to induce more seizures while she is hospitalized.

Didn’t the doctors already find her seizure focus?

First, a definition: A seizure focus is the place in the brain where a seizure begins.

Do you remember the doctor told us back in March that there is a tiny speck of abnormality in her brain which they considered to be the seizure focus? At our appointment in November, the epileptologist told us that he cannot be confident this is the actual origin. They consider her seizure focus to be unknown at this time.

Is she going for brain surgery?

No. She is going for testing to see if she qualifies for brain surgery. She will qualify if the seizure focus can be found, and if that focus is in an operable area. For example, if her seizures originate in an area of her brain essential to her memory, the doctors would not be willing to risk surgery, lest she be altered tragically and irrevocably.

Do you want her to have brain surgery?

Yes. No. Yes. I don’t know. She may qualify, she may not, but either result will be difficult to accept and to process.

More than anything else, I want her to not have seizures. If it takes brain surgery to accomplish that, then so be it. Of course, I’ll take a miracle cure, too. (God, are You listening?)

If she qualifies for brain surgery, we still have to choose to go ahead with it. I don’t look forward to making that choice. If something goes wrong, we could regret it all our lives.

Other than seizures, is Tarica “normal”?

Let me tell you one story.

While traveling on a December night, Tarica said, “Dad, guess how many Christmas lights I counted? It’s in the thirties.”

Linford said, “Thirty-three?”

“No,” she said, “it’s four more than that.”

“Thirty-seven?”

“Yup.”

Is she normal? I’ll let you be the judge.

* * *

Do you have any questions? What have you been wondering? Your questions will help me tell this story more clearly.

It’s snowing like crazy, and I’m going nowhere today. Go ahead and ask away.