A twelve-year-old girl, her hair pulled into a messy ponytail, waits for anyone other than me to walk by the glass walls of her hospital isolation room. She half-sits half-lies on a high mechanical bed with hard gray plastic rails; seven days ago, she had a lung transplant. The transplant happened when they always seem to, in the early morning hours, but we count the days from the first sunrise after you leave the operating room, so today is Day Eight. A transplant is a new birthday, and we count off the days in an official manner.
She is awake and watching the quiet nurses and doctors enter and leave the room by the glass doors; she is bound to a machine by the bed by a pale blue one-inch hose that connects to a clear plastic mask enclosing her nose and mouth, flattening her thin cheeks. A half-inch-wide dark-blue cloth strap encircles her head, fastened by Velcro, holding the mask in place. A click and hiss sound sixteen times a minute, and the hose attached to the mask shudders as the air pressure shifts up and down. The mask and hose push a column of air down her mouth to the back of her throat through her vocal cords and down her windpipe, past the stubs of her old lungs and the stubs of the stranger’s new ones, down into these borrowed lungs, down wet pink tunnels and through tubes with rings of cartilage like a dryer hose and others like sausage casings and then on down to the final stop at millions of tiny sacs where only two cells separate the air of the outside world from the blood of her body.
These millions of dead-end sacs would like to collapse under their own wet weight, but the pressure in the tube and the mask flows into her mouth, down her throat and into her lungs, holding them open, keeping her alive. Awake or asleep, never alone, she wears the mask every hour of the long days and nights. Out of her hearing, we say she is “riding the mask” while her body gets used to the new lungs, if it can.
On this morning she is attached to the bed by more than the mask and the tube. In the crook of her right arm rests an intravenous line we use to draw blood. A larger line runs in the crease between her right leg and crotch, and after it pierces the skin it runs up her inferior vena cava into her right atrium, to monitor the work of her heart as it pumps blood to the new lungs. A plastic tube pierces the radial artery in her left wrist; the end of the tube connects to an expensive carpenter’s level, sensing the moment-to-moment changes in her blood pressure and drawing two steady waves across a small green screen above her head. Her left hand is splay-taped open onto a blue plastic board covered in white panty-hose fabric for her comfort. Another line, as thin as angel hair, dives into her left forearm to travel up through larger and larger veins to float in the fast-flowing subclavian vein inside her shoulder and chest. Four antibiotics and one antifungal pump through that line in a steady stream, pushed in by mechanical syringes at the foot of the bed. We have poisoned her immune system to prevent it from attacking the new and foreign lungs. Any old germ might kill her in the state she’s in. Her right neck holds a supple line for the white liquid fat and the urine-yellow protein solutions that give her body calories because we won’t let her eat while she is riding the mask.
Betadine and dried blood have colored her chest yellow brown, but she was already brownish yellow everywhere, with a shade of green in the daylight, because her liver wasn’t well to begin with and a lung transplant hasn’t helped. Thumb-thick plastic tubes run through her skin in a row under her armpits and between her ribs, coming to rest between the chest wall and the new lungs, draining out any fluid that accumulates. The tubes dangle down the bed and attach to white and blue plastic boxes taped upright to the floor.
The girl is awake and alert for the moment. Two days ago we pulled out the tube that went through her mouth past her tongue and into her throat, pushing aside her vocal cords. For five days after the operation, a ventilator pressed machined breaths into her new lungs, too hard and too fast for an awake human to tolerate. But she got a little better and we took that tube out. With that tube out, we can decrease the sedation. With that tube out, she can speak.
The first word she says is “water.” Her thirst is desperate, her lips cracked sandpaper, her tongue a flopping cactus. We knew it would be, and we had warned her before the surgery. For days we had been draining every milliliter of fluid out of her with tubes and diuretics. But now she starts pleading, sobbing without tears for a drink, and we will not even give her ice chips. We are withholding water from her and she knows it is deliberate and she wants water now; she cannot be distracted and she keeps asking until it is clear we will not give in. She hates us with the solid hate of a seventh grader. She pouts, but doesn’t say she hates me. Her throat is sore and dry and she doesn’t want to waste her words on me, but I can imagine what she would say.
I take it for a good sign. She’s in there, I say. Her head is okay, I say, it wasn’t damaged by being on the heart-lung pump for the hours of surgery. I am happy to live with pissed-off silence. I can stand to be thought of as that mean doctor. I know how to wear my practiced smile, the one that says I know what’s good for you.
She can’t have water. Her swollen body hides liters of fluid, and over the next week it will slowly drain back into her veins. Her body is already full of water, any more will leak straight to her new lungs, and lungs are nothing but living sponges. Fill them up, when they are already touchy, when they are already trying to collapse under their own weight, and she will be in trouble. An hour after water, she will be back on the ventilator, and it will take days to get her back off.
We will not give her water.
So on that morning, she is not in what some more saintly doctor would call a pleasant mood. The nurse and I are standing in the little alcove to the left of the bed, each reading our charts, checking what the consultants have written, entering lab values on various forms, doing the small but constant jobs to keep her body working. The glass doors to the isolation room are closed, but the lights are on. Not much is happening in the room until a clown shuffles by the door.
The clown is a tall man with granny glasses, a red circle on each cheek, a pair of yellow plaid carnival barker pants, two floppy shoes, a long white coat, and a nurse’s cap. He is a professional hospital clown. His nametag says Nurse Clappy. He is the Head Clown in the Clown Care Unit, a trio of roving clowns who wander the hallways of the hospital dressed as doctors and nurses, paid for, or so it is said, by a family whose child died years ago, though they could just as easily have set up a fund for social workers. As he passes by the closed glass isolation door, he looks inside. He smiles at the girl on the high bed. He raises his eyebrows and his nursing cap shifts backwards on his balding head.
His cap is absurd and he knows it. No nurse has worn a cap at a Boston teaching hospital since 1975. No doctor under fifty and certainly no child alive today has ever seen a nurse in her cap outside of a TV rerun. And of course male nurses never wore caps. So Nurse Clappy is in drag; he is wandering the halls of a children’s hospital in nurse-cap drag, strumming his ukulele to brighten the day of all those he encounters. And now he is here, outside the isolation room, peering through the glass and smiling his painted-on smile.
He has caught her eye. She looks at him though the glass, and her returned look is all the clown needs. Nurse Clappy now opens his mouth even wider, and smiles so you can see his back teeth. His eyes crinkle and he faces the glass door, preparing his act. She is still looking at him, eyes clear and focused from her raised bed, turning her head to the left to look at him head on. Suddenly he throws his arms open wide, in a howdy-doodle-do, and mimes Well, hello there! He waves with his right hand and then pulls a full akimbo back arch with a half rightward head tilt. She is still looking right at him. Her right hand begins to move up and off the bed.
He’s got her now, he thinks. He will whisk her away from her bed of pain to his Big Top, to the smell of sawdust and lion sweat, to the ooh and the aahh of watching the daring net-less fliers, to the plumed beauty standing on white horseback. He will be her guide, she will take his padded white glove in hand and escape this room, if only for a minute.
He cocks his head to the left and lifts his long white coat lapel to smell his plastic flower. She is looking right at him. Her right hand is still moving, slowly, side to side for a moment and then back up, bent at the elbow and palm down, unsteady but determined. He squirts himself with his flower. He pants in surprise and pulls out a handkerchief of many colors to dry his tiny glasses. She is still looking right at him and her hand is still rising slowly off the bed, palm down with fingers slightly parted, slowly rotating out from her body, little finger tucking under and thumb rising.
Is she going to wave? She is going to wave! Nurse Clappy loves to play the waving game, to send those happy smoke signals through the glass walls, to share a greeting between fun buddies across seven feet of open room.
Her hand is sideways now, thumb on top, and her eyes are bright. She has lifted her head off the bed a bit to make sure she can see him over the top of the mask. He is smiling and waving and she is waiting and watching, making sure he is watching her.
Her index finger twitches slightly. No, he sees, it’s deliberate, she is going to wave! She loves his clown song, his happy serenade! She turns her hand over even more, and her fingers curl, but not all of them. The middle finger stays upright. The middle finger, the one with the white plastic clamp that measures oxygen in the blood, does not curl. It stays outstretched as she gathers the others into a fist.
She is waving, all right. And Nurse Clappy catches her special wave.
A low throaty growl fills the room. Panting raspy sound flows off her high bed. Short, sharp intakes of air and low, rumbling laughter rise into the air. Her mouth corners into a smile through the plastic mask. Her tight and tired face comes alive with laughter.
Our mouths are open, the nurse and I. We don’t even try not to laugh. We just laugh and smile and wheeze and laugh and she joins us, laughing and laughing. We don’t say anything, we just stand at the side of her bed and laugh, looking back and forth at each other and at her, all three of us stopping and then starting again when we look at each other, and then we try to be serious but we laugh again and giggle and snort and cough and wheeze and sigh and laugh and laugh and laugh until we have washed the room clean with our laughter, filled it enough to rinse out the stale smell of blood and Betadine and fear and anger and worry, if only for this minute. We three laugh until we have laughed enough for ourselves and for each other, for the last week and the week to come. And then we go back to work.
Four days later, she sleeps too soundly. She lets the nurse change her drains without a protest. Her eyes are open, but she looks through me, not angry, not asleep, not awake. I call the surgeon, and he calls the radiologist. We connect her to the portable IV pumps as fast as we can and head to the reserve elevator down the head CT suite. We hover over the technician’s monitor, watching the cuts come into view. We see it right away, a circle of white on the left, and it gets bigger as the machine moves down her head. A ball of fungus has settled down comfortably inside her brain; a ball of fungus snuck through the hole we made in her defenses.
We move more slowly going back upstairs. I make some calls to Infectious Disease, to Neurology, to her family. The surgeon shows the CT to her family and I have nothing to add. We do everything we can over the next thirty-six hours, everything we can think to do, but we know, all of us, that all we can do will not be enough. She dies on Day 12.
Fourteen years later, I remember only parts of this. I do not remember the nurse’s name. I do not remember the color of the girl’s hair or if she had sisters or brothers or anything about her family. I do not remember if all of my memories are right, maybe I mixed up two little girls, maybe it was the other surgeon who was there, maybe it was morning not evening, maybe it was Day 7. Maybe it was Bed Space 10. I don’t trust my memory for that sort of detail. But I do remember her rasping laugh. I remember the smile on her face and in her eyes. I remember her raised finger every time I see an oxygen sensor. My grief for her flows into my grief for all of them, and I can’t remember how I felt when she died. But I can remember as though it is happening now, as though it is always just about to happen, how she wiped the painted smile off the face of that clown. Day after day, week after week, I can go to work, hoping that in every room in every ICU in every city in the country, some clown will get flipped a defiant bird by a thirsty girl with new lungs on a high bed in a glass-walled room, and that someone will be there to laugh with her, and remember.
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Walter Robinson is a pediatrician specializing in lung disease. He will complete an MFA in Writing and Literature at the Bennington Writing Seminars in June 2014.
Nurse Clappy Gets His was published in Artificial Intelligence (TLR Fall 2013).