The baby’s blue eyes are wide open but she’s not looking at me, she’s looking through me, unable to fixate with a normal gaze. Beads of sweat cover the bridge of her dusky nose and her pupils are dilated. Her small hands tremble and don’t quiet with my touch. The monitor suspended above her bed alarms with an elevated heart rate and blood pressure. Suddenly her eyes widen and she is staring beyond me like she is seeing a frightening monster. I wonder if she’s hallucinating. I try to soothe her with a pacifier but she spits it out and screams an angry howl. I ask the nurse to give her a dose of morphine to treat her withdrawals. She is a junky courtesy of her complex medical care. She has been sick her entire life and has required high doses of opioids and benzodiazepines to manage her pain and to keep her sedate enough to tolerate the necessary medical interventions. She is waiting for a lung transplant and until those precious organs become available we walk the line between managing her pulmonary hypertension, which involves keeping her calm, and letting her remain awake. A difficult dance. She looks miserable. Shaky, sweaty, and irritable and likely delirious, all I can do is give her more drug to treat her narcotic dependence.
I wonder what all these drugs do to her brain. Kindling, a theory in neuroscience, states that the brain will change in response to repeated stimuli. In medical school I likened it to how land changed over time when water ran over the same path year after year. The contours of the earth come to reflect the consequences of the constantly flowing water and ultimately forms gullies, ditches, and creeks. Neuroscience hypothesizes that kindling leads to the development of seizure pathways. I suspect our patients develop other neural pathways as a consequence of the care they receive. The beeping monitors, the loss of diurnal variation, the constant pain and irritating intrusions, the sedating medicines must all have a lasting effect on the developing pathways of their small brains.
As I walk out of the room my resident approaches me. Her long blond hair is pulled back in a hasty bun and her grey scrubs hang on her thin frame. She is deferential and efficient and she has worked hard on her service week with me.
“Dr. Gwen, they are ready for you in room 6.”
“OK, can you please order some morphine and Ativan?”
She hurries off to complete the order and I walk slowly towards room six with my hands in the pockets of my white coat. I stroke the smooth case of my phone and twist the cap of an old lip-gloss along with a dog-eared copy of Maxwell’s that I’ve had since medical school.
I enter the room and a red- eyed mom greets me. She has a pile of Kleenexes next to her and she is stroking the hand of her little boy. Her dark curly hair is shoved behind her ears and she is in the same outfit she had on when her little boy was admitted three days ago after being found facedown in a neighbor’s pool. He is connected to a ventilator and an IV pole that holds the life sustaining medicines he needs to maintain a heart rate and blood pressure. Despite all the invasive equipment she has managed to snuggle next to him. I take in the information from the monitors surrounding him. The waveform on the ventilator screen tells me he does not initiate any breaths on his own. His heart rate does not vary and is lower than expected given all the epinephrine he is receiving.
I place my hands on his feet to assess his pulse. He is cool to the touch and his pulses are full and bounding due to the effect of the blood pressure medicine. I move to his head. I pry open his eyes and shine a light into them. His pupils are dilated and do not react to light. I move his head back and forth and his eyes move like a doll. I forgo the remainder of the brain death exam. It has already been done. A colleague from neurology had declared him brain dead several hours ago. His mother had hoped that he would be an organ donor. Unfortunately, his heart had been defibrillated multiple times, his kidneys had shut down, and his liver enzymes were sky high. His once perfect lungs were now filled with chlorine making them inflamed and stiff. No transplant center would take his damaged organs. His nurse, a pretty young girl in a T-shirt reading “Hope”, is standing by waiting for me to tell her what to do. I tell her that I’ll remove the breathing tube and she can stop the medicine that is maintaining his heart rate and blood pressure. The morphine and Ativan arrive and I nod to her. “Go ahead, please, give the doses now.”
I start peeling the tape that holds the endotracheal tube in place. Slowly the medical adhesive gives way and displays his perfect lips. I suction the saliva from his mouth and pull the tube out of his throat. There is no cough or gag, no signs of distress. I briefly cradle his small body then place him in his mother’s arms. She breaks into a sob and rocks him back and forth. I whisper to the nurse to stop the epinephrine and to silence the monitors. I don’t want his mother to hear the constant alarms due to his failing vital signs. I exit the room and pull the thin curtain to afford this young mother a small modicum of privacy and dignity.
From outside the room, I watch his vital signs rapidly deteriorate. His heart rate slows, his blood pressure falls, and his oxygen saturations quickly fall into the seventies. He is not initiating any breaths and all I could hear when I left the room was a faint pooling of secretions in his mouth. The heart rate continues to slow and he loses his p wave. He is now in pulseless electrical activity. I wait for the inevitable asystole that will come within minutes. There it is. His heart rate is gone, his oxygen saturations are zero and there is no blood pressure. I walk into the room and quietly place the stethoscope on his chest. I give it a few minutes and convince myself there is no heart beat or respiratory effort. I look up to the clock and call the time of death. I place my hand on his mother’s shoulder and tell her he has died. She nods and pulls him closer to her. I leave her side feeling as though I have somehow failed them both.
Our rounds begin officially soon after. We start back at bed one and wind our way through each patient in the pediatric intensive care unit (PICU) talking about them one organ system at a time. The language of medicine is efficient and detached. It allows for the rapid synthesis of information to come up with an assessment and a plan. Each patient’s story is told through lab values and imaging studies. Vital signs trends over the past twenty-four hours hint at either slow improvement or probable deterioration. First we talk about what fluids go in and out of the patient, then we discuss hemodynamics and how to improve them, next comes the respiratory system. We analyze blood gasses and make appropriate changes on the ventilator, and then we talk about infectious status and the neurologic state. To an outsider, it must seem cold and impersonal. Where is the person among all those numbers and images? The pattern repeats itself from bed to bed. I am distracted and my thoughts wander back to the little boy in his mother’s arms. He’s gone and we move on with our day. We withdraw from the humanity of it all and find shelter in the numbers, the studies, and the black and white x-rays in order to continue with the practice of medicine and the hope that we will do better the next time. Perhaps our brains have undergone a degree of “kindling” to allow us to continue with the tasks of the day despite the tragedies unfolding all around us.
As I drive home hours later the shaking baby, the dead toddler, and the grieving mother are no longer a jumble of numbers, they are children and parents. I imagine the mother going home to an empty house for the first time without her little boy. I ache for her knowing that there will be reminders of him everywhere – toys, clothes, pictures, scents. All those will linger for hours, days, and years. It’s a mother’s worst nightmare. I wanted to tell her it gets better, that she will survive, but my words at the moment failed me. I left her only with the time of death and a tender touch on her shoulder. Was that enough? Probably no, but words at that moment are like pouring water into a sieve. They drip away with no place to cling to in the acutely broken heart. I begin to wonder about my morphine dependent baby. As I checked out the patients to my partner who would be there overnight, she was sleeping and I’m hopeful that she will have a restful night.
When I arrive home, my daughters greet me with hugs and a running dialogue of the day’s events. The dog is barking and the radio is tuned to NPR. The kitchen is filled with the clinks and clanks of our nanny’s meal preparation. It’s almost suppertime. I listen as best I can and ask the right questions but thoughts of my patients compete for their attention. Eventually the girls wander off to homework or other activities. I enter my bedroom with a glass of wine. I wash away the day and change out of my dirty scrubs. Not sure what to do with this moment of quiet, I curl myself onto the bed and embrace the silence and I picture the wine and the events of the day rolling over the folds of my brain reinforcing familiar pathways.