We have been in the emergency room for nearly five hours. All the routine tests have come back negative. Bent over a clipboard, the doctor, the second we’ve seen in the last three days—the first explained the symptoms of our five-and-a-half month old son, Jonathan, as signs of teething—is filling out discharge instructions. Behind his back, the nurse twice mouths, “Don’t leave,” with decisive shakes of her head.
Whatever bug Jonathan has been battling has taken a rising toll. Over the past week, we’ve watched as his eyes have drooped, as he’s found it harder to suck and swallow, as his head has lolled more frequently toward one or the other shoulder. When the doctor tells us there’s nothing else to do that time can’t heal, Tammy grabs the bottle of formula we’ve been using to supplement her breast milk and squirts some into Jonathan’s mouth.
It dribbles slowly down his chin. The doctor resumes his scribbling.
Hiding a growing frustration, we ask the doctor whether a specialist might be called in. We wait, caught in a net of fear, until a man we recognize from church walks in and introduces himself as the pediatric specialist on call. We are buoyed with relief at knowing that someone will listen to us and help our child. After our family physician arrives, together they examine Jonathan. Our church friend goes to make arrangements for transport to the UC Davis Medical Center while our family practitioner comes out to talk.
Tammy and I wince together as he reports that they performed a spinal tap. Tammy asks if it hurt, to which he briefly hesitates, then softly replies, “It didn’t hurt him. He’s not responding to pain.”
A moment later, our church friend emerges. His soft Southern voice gently announces the possibilities—Encephalitis, Meningitis, Infant Botulism—words that leave us stranded and gasping for air.
Next thing I know, Tammy is in the back of the ambulance with Jonathan, the image of our family doctor and his slow wave receding into the distance like a sad ghost. I race toward our car so I can follow behind. The trip seems to take hours—why don’t they turn on the damn sirens? I scream into the silence.
As we pull into the emergency dock, Jonathan is swallowed into an eddy of doctors—attending physicians, residents, interns, teams of specialists from trauma, pediatrics, respiratory, infectious diseases. Her eyes wet, red slits, Tammy will tell me later that, all the way there, a young woman EMT hovered above Jonathan’s face, sheathed scalpel in one hand and respirator tube in the other, ready to perform an emergency tracheotomy if he stopped breathing.
That night, as we’re standing by Jonathan’s bedside in the Pediatric Intensive Care Unit, a young resident comes in. I hear only snatches of the next few moments.
Spinal tap. Positive. Meningitis. The last word, a black terror, sends my mind casting frantically for something I am sure I have read or heard before. The viral type of the disease is treatable, but the bacterial variety can be fatal. Or is it the other way around?
Later I will hardly remember crossing the parking lot sometime after 1:30, heading toward the Kiwanis House, subsidized housing provided for parents of children in the PICU that has the look and feel of a group home. I will recall looking around as we walk, and in the shadowy yellow glow of florescent light filtered through tule fog, briefly wondering whether this is a place we are likely to get mugged.
It is just starting to get light out when we make the return trip back to Jonathan’s bedside that morning. A doctor new to us, a pediatric neurologist with sandy hair and a beard that reminds me of Freud’s, introduces himself. He does not smile, but his calm soft-spokenness feels somehow reassuring.
“Mr. and Mrs. Hoyer,” he begins, “there’s been a mix-up in the lab results. I’m sorry for that…but Jonathan does not have Meningitis.”
Is this some kind of sick joke?! How could something like this happen? I think. My outrage evaporates into relief and just as quickly descends in a dark rain of not knowing what we face.
A stool sample has been sent by courier, priority alert, to an Oakland lab equipped for the specialized tests needing to be run, a process that under normal circumstances takes a day or two.
The circumstances are far from normal.
Fires, feeding on the abundant fuel created during the past several years of drought, rage through the Oakland hills, burning hundreds of homes and threatening thousands more. We learn the next day that the fire has leveled the lab and that all their specimens—Jonathan’s included—have been re-directed to the Centers for Disease Control in Atlanta.
Tammy and I travel each day only between Jonathan’s bedside and the Kiwanis House, with an occasional detour to the cafeteria, usually arriving at the hospital before first light and not leaving until our eyes drop from fatigue, often after midnight. Regulations do not allow us to sleep the night in his room, though they can’t stop our dozing in the one chair provided, which sits next to the window. We take turns at his bedside, joining his favorite stuffed animals, a white puppy with black ears and a puffin with a bright orange beak tipped in red. We have taken leave from our respective jobs at the university, and my parents have come down to lend support.
Jonathan’s strength has continued its downward spiral. The doctors increasingly suspect botulism, and the repeated inquiries by interns on rounds—did you give him honey?—feed our incessant self-interrogations over whether we have somehow caused his illness.
Could the peach brandy we rubbed on his gums the other night for teething pain have been infected with botulism? I remember asking one doctor.
They have prepared us for the likelihood he will have to be put on a respirator. Still, our hearts quicken and then grow leaden one morning, after the nurse’s routine vitals check, when a team of doctors enters our room and asks us to leave during intubation.
The sudden shock, upon our return, of seeing blue tubes sticking out from the mask of tape he wears on his face is counterpoised by the rhythmic whoosh of the ventilator punctuating the stillness. By the end of that day, he is lying motionless, every muscle in his body now paralyzed. The only movement comes from his brown eyes, which, when Tammy pries them open with thumb and index finger, look from her to me and back again in a silent plea.
The total paralysis points to botulism, and our favorite nurse, Peter, brings us an article from a professional magazine that outlines the causes, symptoms, treatments, and prognosis. We learn that botulism, typically associated with unpasteurized honey or improperly canned foods, is a spore common in California’s agriculturally rich soils, where it attaches to dust and is borne by the wind. Although routinely inhaled, only rarely—in about six of every hundred thousand California infants between two and nine months of age—does the spore manage to colonize the colon, producing a neurotoxin that paralyzes every muscle in the body. Conditions of drought, like those of the past several years, bring an increased incidence of the disease.
Jonathan’s depleted body and world of almost-perpetual darkness work like a tranquilizer and he sleeps often. When he wakes—our only clues come from watching the numbers measuring heart rate and blood pressure climb on the monitor, or opening his eyes and seeing them look back at us—we read him I’ll Love You Forever, Grandfather Twilight and Goodnight, Moon. Or we hover above his face, taking turns speaking soothing words to eyes shining with reflected light, the only beacons of life coming from his otherwise still body.
We try to tune out the sounds of trauma and tragedy—the squeak and clatter of gurney wheels, the commanding tones of doctors issuing orders, the metal-on-metal scraping of curtain runners in their tracks, the muted pounding and squeak of rubber-soled shoes running down the hallway and turning a corner, the heaving sobs and hysterical crying of distraught family members. We focus instead on the consistency of the ventilator’s puffing, the routine of nurses coming in every two hours to check his vitals, the movement of his eyes when we lift his lids and he looks up at the faces of Bert and Ernie floating above his bed, a miracle of helium and string. Despite the cocoon we’ve tried to build around ourselves, the words penetrate—GSW, knife wound, third degree-burns over seventy percent of his body, spina bifida, leukemia, brain surgery—the methodical-ness of tragedy knocking at our hearts like acorn woodpeckers on stumps of rotting oak. At one point the trailing notes of a mother’s wail is accompanied by a murmured “I’m so sorry.”
At such moments, we find ourselves at his bedside, clutching each other’s hands, stroking an arm or leg in a hypnotic rhythm of reassurance until the sounds fade and silence again seeps under the door.
One time, as I drowse in the chair by his bedside, my mind drifts to the moment I first held him, after seventeen hours of arduous labor that preceded his delivery by C-section. I gazed into his eyes. A buoyant joy lifted and carried me, like a river current freeing a snagged bobber from an underwater branch and carrying it downstream, and I watched the impotence of my inability to do anything but stand by during the labor and C-section grow smaller in the distance. Before we left for the one-mile drive home from the local hospital where he was born, I leaned back over the driver’s seat and rechecked his car seat straps for the third time before starting the engine. Shortly after arriving home, I caught Tammy’s reflection in the bathroom mirror. Our eyes met, and I saw in them the same question neither of us would voice, about the wisdom of releasing this helpless infant into our care. Later, I watched my own hands, which could once grip a football with poise and assurance hold him during his first bath as though he were delicate hand-blown glass.
As I gaze at his paralyzed body, my hands, now lying stranded in my lap, clench as if trying to hold onto the images of his former strength and vitality—raising his head on the day of his birth, laughing for the first time at 2 ½ months, lifting his four-month-old head and chest off the floor, scooting himself along the kitchen floor, sighing softly after a sneeze. We thought nothing could check his exuberant aliveness but hard walls and closed doors and a pair of doting first-time parents who wanted to spare him as many bumps and bruises as possible. We certainly never imagined this.
Now each pulse of the ventilator pushes us along, defenseless and disoriented, on a flood of uncertainty, the water so silted we cannot see ahead. Four to six times each day, Tammy pumps breast milk, which the nurses supplement with specialized formula mixed with prune juice and mineral oil, the concoction emptied into the plastic bag hanging from the pole beside his bed and then into Jonathan’s stomach through the NG tube. I, too, yearn to wield the weapon of doing—feeding him, changing his diaper, rocking him to sleep—of anticipating and responding to his needs. Instead, I must ride the flood, the blinking of the monitors’ lights drawing my eyes like the glinting of moonlight off the teeth in a sea lion’s open jaws.
We have been in the hospital for more than a week when the news from Atlanta finally arrives, confirming the doctors’ suspicions that botulinum has indeed invaded and populated Jonathan’s body. We breathe in the news and breathe out with the ventilator’s whoosh.
With this certainty, Jonathan is immediately enrolled in an ongoing study of the connection between Infant Botulism and SIDS, Sudden Infant Death Syndrome. The study team has already developed a promising anti-toxin now in clinical trials. Hope turns to outrage as we soon learn none is available. The entire supply had been requisitioned by the U. S. government and shipped to our soldiers in Iraq in preparation for a potential attack by a “dirty bomb” filled with the botulinum toxin. Even eight months after the cease-fire ended the conflict, the anti-toxin has not yet been returned.
The only remedy left is time and appropriate life support. The body, we are told but cannot completely believe, will heal itself. Though it will be a long haul—continued hospitalization for four to six weeks—Jonathan’s prognosis is good. It is altogether likely, the doctors tell us, that he can make a full recovery as his body slowly flushes out the neurotoxin and his muscles gradually regenerate and strengthen. Full recovery of normal muscle function may take longer—perhaps a year or more—and require physical therapy for some time.
In the days that follow, we meet parents of three infants from our area alone that had contracted Infant Botulism. The children have recovered to varying degrees. One, the father tells us, shows only minor lingering signs of occasional muscle weakness on one side of her body. Another still requires the help of an iron lung. The third, three years old, the only one of the three who is brought to our meeting, is not yet walking.
After the diagnosis, we spend days navigating through moments of fear—over urinary tract and upper respiratory infections, new antibiotics, a swelling trachea and the possibility of having to change the respirator tube—finding temporary holding spots in visits from friends. A couple we met in birth class delivers a dinner of chili and cornbread. A co-worker of Tammy’s brings news that weeks of vacation leave have been donated. Our pastor hands us a check for $627 collected at Sunday services. A neighbor strings up a horse mobile that plays a tune in a minor key which will soon become too sad to bear. Other music is more soothing. A therapist playing a guitar sings “Twinkle, Twinkle, Little Star” and “Old MacDonald Had a Farm.” Tammy’s oldest sister, Vickie, sings sweet a capella versions of “I’m a Little Teapot” and “Barges.”
One day, as sudden and subtle as the first hints of autumn after a long summer, we see signs of recovery, the twitch of a finger, the flare of a nostril. More signs arrive in the coming days, like geese arriving from the north. I have no movie in my memory of this period, only snapshots. A first poopy diaper. The trace of a smile. The flexing of a tiny foot during a bedside bath. Small fingers clutching but not quite able to shake a yellow-handled rattle with a pink ball the size of a snow cone on top. The respirator rate at night being lowered from ten breaths per minute to six. The flutter of eyelids. His mouth sucking four or five times on a pacifier before its blue body and red and yellow handle tumble past the matching colors of the balloons on his white pajamas.
In our fifth week in the hospital, the breathing tube is removed. We worry that it is too soon, that our impending move to the main pediatrics floor will mean insufficient care, a delay in response if something were to happen. On Thanksgiving Day, we leave Jonathan’s bedside briefly to go to the Kiwanis House to eat what is supposed to be a traditional holiday meal but is anything but. The employees of Southwest Airlines, who prepare and serve the food, rein in their customary levity out of respect to us parents whose children remain in the PICU.
I look around the room and note that some parents whose child’s prognosis is not good are not there. Just before the meal is served, a couple to whom Tammy and I spoke briefly the day before while their infant son underwent surgery—a brain tumor—leave with their suitcases, their eyes dark hoods, their faces frozen masks. Our fear at the unpredictability of our own children’s situations, our pain at our own futility, shroud the room after they leave. It is impossible to be festive, and impossible not to offer a silent prayer of thanksgiving for Jonathan’s improvement. I cannot taste the food in my mouth.
On December 1, after six long weeks, we are finally sent home, though with feeding tube still in place and with a new device, an apnea monitor, that measures Jonathan’s respiration rate while he sleeps and sounds an alarm when it falls below a certain threshold. Tammy and I continue to sleep only fitfully, fiercely attuned to the monitor, which blasts us out of bed on an intermittent but regular basis, even though each alarm turns out to have been triggered by Jonathan’s body somehow pinching the tubing and skewing the monitor’s reading.
Eating voraciously—rice cereal, peas, carrots, sweet potatoes, peaches, pears, bananas—he gains two pounds in two weeks. Sounds of ma-ma-ma-ma-ma, da-da-da-da-da, ba-ba-ba-ba-ba tell us his lungs are recovering. My shins soon discover how quickly he can scoot backwards in his walker. He cannot yet roll from his tummy to his back, something he could do prior to the illness. The only other physiological reminder of his trauma, and the only one that will continue into the future, is a right eye that droops when he gets especially tired. It will turn out that he will walk on schedule, at eleven months of age, and that the pediatric neurologist, who has told us he’ll want to follow Jonathan for three to five years, will release him when he is only one year old, in late April, half a year after we emerged from the hospital.
On Christmas Eve, under a tree that sits in the middle of our living room, Tammy and I hold each other, the lights and ornaments that glint in the darkness momentarily thrusting me back a few short weeks into a dimness illuminated only by the glow of monitor lights. My sudden sadness disappears in the flash of another memory, the opening sentence of an essay I wrote in the fifth grade: The Christmas tree is a symbol of everlasting hope.
On New Year’s morning, we are watching the Rose Parade on TV when Bert and Ernie float past. Ernie sings out, “La, la, la, la, LAUGHTER,” as if cued by Jonathan’s sounds while wheeling his walker across the floor, a pacifier in each hand, conducting a symphony as sweet to my ears as Beethoven’s Ode to Joy. I listen to the only Christmas gift we got—the only one we needed—and believe, finally, that Jonathan has truly returned.