This is part four of our epilepsy story. Read part one, part two, and part three here.
Where we are in the story now: It’s early, early Wednesday morning at Children’s Hospital of Pittsburgh. Tarica has been irrational, hallucinating, and fighting ever since mid-afternoon on Tuesday. We still don’t know why she is seizing.
* * *
Around 2 a.m., Tarica fell asleep. Linford and I lay down. My muscles shook, and my knee throbbed. Sometime in the last twenty hours, I had bruised it badly, probably while I was wrestling with our daughter.
Tarica woke with seizures throughout what remained of the night, thrashing and fighting in her bed, although she was more easily subdued than before. I stumbled between her bed and mine, and when Micah requested his breakfast before seven, I felt as if I had not slept at all. I fed him, amazed that I could still do this. Yesterday had wrung me dry in all ways but this one.
Linford and Tarica were sleeping, but they wouldn’t stay that way long if I turned Micah loose. I crept out of the room with him and my Bible to the window-enclosed lounge at the end of the hall.
Dawn was breaking over Pittsburgh. Micah pushed his nose against the glass, hands braced on the radiator, and watched the headlights track back and forth seven stories below us. I curled up on the slippery couch in the corner and opened my Bible. The words of Micah 7:7 jumped off the page: “Therefore I will look unto the LORD; I will wait for the God of my salvation: my God will hear me.”
I stopped reading and swallowed hard. I looked from the words of the prophet Micah to my son who bore his name to the wall of windows. The headlights and brightening horizon were unfocused blurs beyond the tears. My God will hear me, and He is my salvation. I could no longer see to read, so I prayed the sun up and my fear down until little hands tugged at my skirt and a parent holding a crying child walked in.
As I returned to Tarica’s room, I thought about that parent’s weary face. Could the nurses tell at a glance which parents were still waiting for answers? Did we wear our shock and grief on our faces?
Tarica woke and demanded food and water, which we could not give. Her MRI, according to the nurse, was scheduled for 11:00. Linford’s mom returned and resumed care of Micah, so we could focus on Tarica, who did not handle her fast well. She begged and pleaded, bucking on the bed, for her sippy cup, for “eggies,” for anything, and I wept with the strain of saying “no, not yet, just wait, sweetie, I know it’s hard, just sleep for a little,” over and over again.
Under the influence of the drugs, her vision doubled and tripled. She looked at Linford holding Micah and thought her daddy had two heads and was holding three babies. When Doctor Katie came in to see how she was doing, Tarica, lucid for the moment, squinted at her. “One…two…three…four…five… six,” she said, the words blurred. She laughed. “You have six eyes.”
In the light of a new day, it became evident that the Fosphenytoin given to Tarica had created the nightmare. Her dose at two in the afternoon did not allow her to sleep until two in the morning. We requested that Tarica not be given that drug again. We could not survive another twelve hours of insanity. She was then put on a drug called Keppra.
My parents and sister arrived. Cassondra hugged me, and for a moment, I mentally sagged. Oh, to not be brave for just a little. Tarcia summoned up smiles for them, but they were shadows of her usual ones. I saw their tears at the sight of her hooked up to machines, eyes glazed and heavy.
Around noon, the EEG wires were removed in preparation for the MRI and spinal tap. Sometime later, the MRI team came for Tarica. Linford went with her. Everybody else took Micah down the hall to the lounge while I lay down for a nap.
I had slept for maybe twenty minutes when the door opened, as doors frequently do in a hospital, and a nurse peeked in. She disappeared without a word, but the damage was done. I rose, took a shower, gratefully climbed into clean clothes, and went to find my family.
My parents and sister accompanied me to the cafeteria where I forced myself to eat a full meal, my first in a long time. We talked as I ate. “My greatest fear,” I said, staring past my father into an exterior courtyard dripping with rain, “is that her brain will be permanently damaged. What if—” I choked back tears and poked at my green beans. “What if she’ll never be our Tarica again?”
Nobody said anything for a long time. Micah jolted in his stroller where he was sleeping but didn’t awake. The buzz of the cafeteria faded, and we sat in a cocoon of silence.
We returned to the seventh floor and waited until Linford and Tarica arrived. She was groggy from the anesthesia and desperately thirsty. When I handed her a sippy cup, she drank without stopping until it was nearly empty. We discussed food and ordered it, giving her graham crackers while we waited for the food to arrive.
A woman from the EEG department showed up to reattach two dozen wires to Tarica’s scalp. It didn’t go well. We were running out of distractions, and the food inconveniently appeared after it was over.
The day fell away. My parents left, taking Linford and his mom with them. Cassondra stayed to help me with Micah, but she also occupied her still-distraught niece when my attempts failed.
That night, thank God, we all slept as well as can be expected in a hospital. The EEG captured continual seizure activity in Tarica’s brain, but she slept undisturbed most of the night.
To be continued, in part five.
Those drugs sound familiar, altho Christopher was on Fosphenytoin while under sedation. But when he came off and the Keppra hadn’t kicked in yet… oh my. He wasn’t old enough to tell us what he saw, but he fidgeted and wouldn’t sleep for hours.
I hope little Tarica had a good birthday yesterday, aside from her arm injury.
Prayers going up everyday for y’all from our little farm here in Georgia. Stay warm!
She had a good birthday, all things considered. For one, we had an affirmation of God’s mercy. I’ll tell you about it tomorrow. If it’s half as cold in Georgia as it is in the mountains of Pennsylvania–it’s still cold! I think we skipped December and wandered into January when nobody was paying attention.
God does hear you and you are getting the strength you need, hang in there you have lots of prayers out there for your family
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