There is a pinpoint of light on the computer screen that grounds me as I transcribe numbers, chart vitals, and track the path of my six-month-old patient from scribbles on scraps of paper towel taken from his isolation room. Even without the computer screen, there is a bracing light on the bedside monitor, always present. Even without the monitor, there is a presence in my mind when I call it up, and I can buttress myself when the ICU alarms blare, and when parents freak, and when the residents forget what comes next. I finish my RN emergency-check this winter morning, gowned and masked and gloved. The baby’s isolation door is shut against the Pediatric ICU clamor, and I quickly assess whether we can safely move this patient into his parents’ arms. When I say the word, four professionals will rush in to help me. It will take that many to lift and support him; change out the bed beneath him; turn his head to the foot of his larger bed; protect all his IV lines, his chest tubes, and his high-frequency oscillating ventilator; raise him on pillows on his mother’s lap at the foot of the bed; and make sure his blood pressure, heart rate and oxygen saturation stay as stable as possible during the transfer. No one will question my judgment, even as we spend the rest of the morning recovering his fragile oxygenation, even though we cannot increase the settings on his drips or his ventilator—they are already maxed out. There will be no escalation of care. His parents have agreed to no further heroic measures beyond what we’re already doing. They only want to hold their son. When the geneticist shows up in the afternoon, I am still playing catch-up with all the labs that continue to be sent, with all the ongoing drips and blood gases, and of course, the documentation. I focus on the pinpoint of computer light when she tells me she needs to collect biopsies 149
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for genetic studies. My voice is calm, if disbelieving, and so am I, when I tell her, “You know he’s dying.” She nods her understanding and I remain unconvinced that she actually wants consents and biopsies right now. “He’s actively dying,” I say. “I don’t know if there’s time for this. Is this really necessary?” I mean this in the kindest possible way and I hope my voice conveys that. She assures me the parents are expecting her; she’s talked to them and they want her to do this. I’m still dubious, but Dad confirms this and asks through the door for a pen so he can sign. The middle-aged geneticist gowns up and I repeat to her, “You need to be prepared, he’s vigorously dying, I don’t know where you’re going to find any skin for punch biopsies, and I won’t let you hurt him.” She gives me a look, says, “Just give him some pain medicine, this is the ICU, you can do that,” and I shake my head. I don’t know if he’ll survive a morphine bolus and I don’t know if he’ll survive the pain of her procedures. The genetics doc approaches parents and baby, and I see her gasp behind her facemask as the color drains from her face. She wasn’t prepared at all. What did she think dying looks like? I’m annoyed, but I find my center. I connect to something steady, and I swiftly pull a chair up for her next to where Dad is holding baby securely on the pillows, the ventilator tubing strapped to the bedding from the high-frequency oscillating ventilator—that in 2009 sounds deceptively like an overactive lawn sprinkler on a carefree summer day. I apologize to Mom and Dad. I’ll need to disturb them to reposition their little son so this doctor can find some skin for her punch biopsies, and I do so as gently as I can. He has so many dressings, so many tubes and lines and IVs and wounds, and the skin I find has almost no padding; this six-month-old baby weighs 3.6 kg, or less than eight pounds. The geneticist very carefully proceeds, and each time she collects a specimen I monitor for pain, for changes in heart rate and continuous blood pressure and oxygen, and the doctor’s eyes tear up until she’s fully weeping by the time she has her last sample. “I’m so sorry,” she tells the parents, dabbing at her eyes with a tissue. “I’m so sorry to disturb this time for you with your baby. I wish we could do more.” The baby’s mother comforts the doctor and I almost lose my center again. Families in grief are comforting their caregivers…No, I protest inside, until I find the glimmer of light on the bedside monitor and I remember to breathe. “It’s so important to us,” this mother says, “that after these biopsies 150
go to the Netherlands and become part of the research into this rare condition, that maybe other babies like ours will live,” and my heart opens. Even to the genetics doc. The day wears on. We watch. We watch his color deepen to something unhappily blue-tinged; his fingers and toes and mouth are dusky gray. We watch his vitals dip and rise. His oxygen hovers as his nasal flaring increases and we cannot bleed any more nitric oxide into his ventilator, it will hurt more than help. His parents are too frightened to go anywhere for nourishment, but they finally leave in turns for ten minute intervals to gulp something down, probably junk food. I make sure they drink water, at least. He continues to spike fevers and I am still running triple antibiotics, triple anti-fungals, pressors and milrinone. I begin to frazzle at the edges when a nurse pokes in her head to tell me I’ll be docked for not taking a timely break. Really, that’s your concern? You’re going around telling people they’re out of compliance when I could use some help here? If it’s help for five minutes, there are plenty of people. If it’s ongoing help, no one can be spared. The first time the palliative care doc shows up at my computer and says, “How can I help?” after I update her on our patient, I say I want a cup of coffee, and she brings it back to me from the kiosk downstairs. The next time she comes by I don’t know what to ask for, I need so much. A point of light, maybe. “Do you want a hug?” she asks. The first thing I think is that I don’t have time, I’m too busy. Can’t you see how busy I am? And a hug is exactly the thing I need. It takes five seconds and I’m back to work. Grounded. By end of shift, it’s clear the parents need to stay close. They sing softly to their baby, they stroke him, they hold each other until his heart stops and their child is gone. His ventilator still huffs and puffs until the respiratory therapist turns it off. This child’s struggle was valiant. So was theirs. The room is filled with his light. My center is secure. Traditionally, I will help to clean him now. I will remove his dressings and lines and wash the evidence of medical interventions from his beautiful body. Before I can do so, I step out of the room to get some clean linen and to give his parents a few moments. It is 7:00 p.m. The day shift is signing off to the night shift. On my way back from the supply room, the night charge nurse stops me. “You’re not staying over,” she announces. “Just give a fast report, someone else will wrap the body. We’re not paying any overtime for this.” Just like that, my composure abandons me. I turn on my heel and leave the ICU. I head straight to the nursing lounge to collect myself. I am alone 151
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at a table, shaking with anger when a respiratory therapist sits next to me and begins to massage my hands with her Mary Kay massage cream. I don’t stop her. We finally speak, hesitantly. Yes, the baby died. Yes, I should be with the family. Her touch is firm and sure and strong and my mind clears. I find my own presence, my balance, and I know I don’t give a flying expletive if the night charge nurse has issues that are not mine. I know her, the night charge nurse, from when I used to work nights, and I know that at first look she appears hard, and that her flat exterior hides a well of compassion so deep that it frightens her. She won’t look too deeply at what was lost today, or at the fear that threatens every caregiver-witness who shares that deathwatch, who enters that space. I rise, I punch my timecard, and I reenter the ICU on my own time. I go directly to my patient’s room. In death, the baby has been bathed and swaddled in his own soft blankets, and his parents are waiting for me. “We looked for you, we wanted to thank you. Where did you go?” We embrace and I tell them I’m so sorry for their suffering, their child was a blessing, we’ll always remember him. I don’t recall what else I say. “Thank you,” they say. “Thank you so much.” Their baby son has died and they thank me. This is irrational, it’s nuts, I think, before the pinpoint of sanity finds me…We hold it all, the sorrow, the anger—so much sorrow, so much anger—and the stillness.
P O E T RY
DAVID ALLEN SULLIVAN
The day my dad’s felled by a stroke from which he won’t recover, I bike my daughter to school as always. Speckled hawk, back plumage roughed against the cold, perches high on a telephone wire. Redtail turns, looks through me as always. This time I drop my bike, raise my cell to take a photo. The screen shows only arcs of the quivering wire. No one’s called me yet.