“I need to call the neurologist. The shunt could be malfunctioning,” my wife said, comparing the number on the tape measure to the last one on the chart. The graphic depiction of our son’s intracranial pressures.
“Can’t this wait?” I prevailed upon her. Won’t you let me rest awhile longer, on my tufted pillow? Before we go to the hospital, with its blizzard of paperwork and sedated, muted sadnesses? Fentanyl drips and numbing creams and promises that none of it will sting….
She looked at me incredulously. “I’m going to pack a bag,” she said.
And that was it.
We waited in the children’s waiting room, a depressing refuge with too-small furniture and stenciled characters on the wall. I sat on a chair that rose barely twelve inches off the ground. Lucas wore a hospital gown with polka dots and clowns, whatever a social worker had determined to be less upsetting to children in hospital settings.
“Don’t get impatient, hon.” My wife patted me on the arm. I stared at the wall clock.
“Daddy, want some eggs?” Lucas was scrambling eggs on the play stove.
“That sounds delicious, son.” They had to drill into his skull with a craniotome. The skull vault is visualized, that’s what the operative report read. The occipital vaults are noticeably enlarged. Implantation of a ventriculoperitoneal shunt will be necessary to relieve the pressure on the brain.
“Can I have a hamburger?” my wife asked. “With Swiss cheese and a pickle?” The playroom had buckets of plastic fruit, sandwiches velcroed together, an entire rack of condiments with fake names like Hollman’s mayonnaise and Golden’s mustard. The surgeon said the shunt would need to be ‘revised’ as he grew older, else it would clog and not filter properly. If the shunt backed up, we could have an urgent situation on our hands, the surgeon said, as he winked at me, and slapped me on the back to ensure that I understood the point he was trying to make.
“Here, Momma.” My son laid a plate in front of his mother with the burger, delivered to order, plus a chocolate shake he had found somewhere in the refrigerator.
“Ooh,” she cooed. “That looks delicious.” My wife had been the one who brought him to the operating room. She wore surgical scrubs and ridiculous booties and told our son that they were going on an adventure. “An adventure!” she cried, as she scooped him up in her arms and carried him through the swinging double doors. What happened beyond the door, after they’d anesthetized him and inserted the drill bit, is documented in the operative report. What happened in the operating room, after my wife handed him over, is inscribed in her heart in a place inaccessible to me.
A social worker descended upon us, asking how we were doing, giving us a pamphlet entitled When Your Child is Ill.
“We’ve already subscribed,” I retorted.
The neurologist asserted that he needed to run some more tests to determine whether the shunt had been compromised. We need to make sure it’s not backing up or we might have an urgent situation.
My son handed me a bowl of fake cherries. I pretended to gnaw on them and to spit out invisible pits. “Well, do you suspect that’s what’s occurring?” I asked the doctor.
“Dandy-Walker syndrome is a tough one to manage,” he said, making eye contact, touching me on the forearm. I’d read that they now taught doctors empathy, taught them to refer to their patients by name, rather than case number, Lucas, instead of five-year old male with cerebrospinal fluid compressing his brain.
“I need to get air,” I asserted.
My wife glared at me. “Now?”
I shrugged my shoulders. In truth, I needed to be somewhere, anywhere but this windowless playroom with watercolors by sick and maimed and departed children. Children in backless gowns, parents hunched in tiny furniture, the war stories of the afflicted. We saw you last year, didn’t we? Our daughter is doing so much better! She’s only seizing ten times a day, instead of one hundred. They had to take a chunk of her brain, a nodule in the left hemisphere, but it was worth it, I think. . . .We don’t know if her speech is gone, we have hope that her brain will re-map, that those functions will shift over to the other hemisphere.
“Where are you going, Daddy?” Lucas asked.
“I’m going to get something to eat. Do you want something, son?” I could promise him anything. Famous Amos cookies, cheez doodles, cast-offs that resided in vending machines, unable to find a wider sales base. I could promise him, but I wouldn’t deliver. His stomach needed to remain empty in the event they had to operate.
My wife looked away.
“I’ll be going, then,” I said.
I made my way to the parking lot and sat in the Volvo. I did what I generally do in moments of crisis and despair. I called the office.
“Hello, Helen. Uh, no I won’t be coming in today. A matter of medical urgency, it appears. No, nothing to worry about. Not yet anyway. Ha! Could you take a look at my desk please? Did that charlatan McCreary leave me the latest iteration of the fourth quarter figures, as promised? Well, just check the numbers, make sure it all adds up, fix the columns, you know I’m not so good with the formatting.”
“Will?”
“Yes,” I replied, sitting in the idled car, finishing my morning cup of coffee. The one I had poured in the Keep Warm cup. (The hospital had recently granted a concession to Chock Full O’ Nuts, I noted. An improvement over the watered-down brew in the vending machines, the sad drip-drip from the automated percolator.)
“Mike can take care of this, you know.”
When Lucas was born, the team sent a basket with rattles and a giant stuffed teddy bear. Helen included a note that said call if you need anything, anything underscored. Human Resources rushed over the insurance paperwork, sensing the import of he needs to stay in the intensive care unit for a few days to monitor the build-up of fluid in his brain for their contingency planning.
“Do me a favor, Helen, and just check the numbers. Tell Daly I should be in mid-week, at the latest.”
The number of wings and sleek walls and reflecting gardens, courtesy of the usual benefactors, was impressive. A soaring marble lobby and light-filled atrium. A sober, black wall inscribed with the names of multi-million dollar donors. None of it enough, however, to prevent little Grace from contracting a deadly hospital infection and dying after routine surgery. To stop little Hannah from seizing, even after an eight-hour surgery during which the connection between the hemispheres was severed, a hunk of the left hemisphere removed. To prevent fluid build-up in the brain, white matter compromise, irreversible damage, we can’t explain why, we can just keep it in check.
I returned to the waiting room. My son was gone. My wife sitting on the kitchen play chair with the wobbly leg and the broken back. Stirring an empty cup. Having tea with one of the other children scheduled for the O.R., a girl whose parents were off nail-biting and grilling the surgeon about the integrity of the blood bank, quizzing him about the chances of contracting Hepatitis B from some deranged individual intent on corrupting the blood supply.
“May I join you?” I asked.
She looked away. “This is Isabella.”
“Pleased to meet you, Isabella,” I said, pretending to drink tea. Isabella smiled. Her head had been shaved before. I could see the scar around the crown of her head.
“Some sugar, please.” Little Isabella deposited three cubes into my empty cup. The brain has over 100 billion neurons. Did you know there are no pain receptors in the brain? I had learned a lot from the musings of doctors.
“So, can you put a number on it for me?” the father said. “I’m not consenting to a blood transfusion without one.”
“The odds of her contracting an infection from the blood bank are less than those of a plane crashing into the O.R.,” the head of neurosurgery replied, ever so sensitively. Why are you silly parents worried about blood transfusions when we’re shaving your children’s heads, exposing their brains, monitoring their seizures on closed-circuits systems, Is that a tonic-clonic? Or a complex partial seizure? Half your child’s brain has died off, and you’re worrying about a blood transfusion?
Isabella graciously poured me a second cup. “Thank you, Isabella. It’s quite good.”
My wife took two sugars in her tea. She didn’t look at me. Who could blame her? I’d left her there alone in the playroom, there to contend with our son. To eat the sandwich he had made from velcroed pickles and wooden slabs of ham. To act as if everything were all right, as if they were just having an adventure, there in the windowless room with the children in hospital gowns and the parents in disposable scrubs. To suppress her fears, her worries about surgical outcomes, including the not negligible possibility that they might need to remove a portion of his skull to relieve the pressure. To maintain enough presence of mind to interrogate the doctors. You’re not going to let the resident operate, are you? You’ll let us know right away if there’s a blockage, won’t you? If the shunt needs to be revised?
Down the corridor, through the swinging doors, she’d carried him. No doubt singing Wheels on the Bus, or more likely, You’re my sunshine, my only sunshine, choking back the tears, desperately hoping that her measurements were off, that there was no damage – His pupils look okay, don’t they? – hoping that she’d just overreacted, it was only half an inch, Half an inch is within the margin of error, isn’t it?, trying to maintain the meter, trying not to sing off-key, music was soothing to people in hospital settings, music reached people in comatose states, Mozart was especially euphonious, until she arrived in the operating suite, in her blue booties and paper-thin hospital gown. You can just put him on the table and say goodbye, bending down to kiss him on the cheek, wiping her eyes on the circus gown, quickly so he wouldn’t see her. You’ll be mommy’s brave boy, won’t you? Holding his hand while the anesthesiologist put the mask over his mouth. Count backwards from ten and you’ll remember nothing. The nurse would usher her out of the suite and into the corridor, to walk back alone, empty-handed, back to the waiting room with the too-small furniture.
I grabbed her hand.
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