I’ll never understand why some patients end up as percentages

by Evelyn Lai CRNP December 19, 2017

Monday

I walk into your room in the pediatric intensive care unit as two nurses are repositioning you. Your parents stand nearby — your dad in his frayed baseball cap and khaki cargo shorts. Your mom in baggy jeans wrinkled with the same worry as the lines near her eyes. Your little sister sits near the window with a blue hospital mask over her mouth and hugging her knees. Grandma sits snug beside her with her back straight and hair done, expression cordial.

You are a fifteen-year-old boy with leukemia who came into our emergency department last week with fevers but spiraled quickly into septic shock with multiple organ failures.

–>

I am the nurse practitioner in the inpatient infectious diseases service at a children’s hospital in Southern California. It’s my first year here, and — having worked for years in rural areas — I’m only newly adjusted to being in a large urban teaching hospital.

I look at all six-foot-plus of you lying in bed and automatically start counting the tubes and drains coming out of you — two chest tubes on the right, two on the left. One drain from your right abdomen, one from your left. Six pieces of plastic draining fluids of different colors and consistencies into various containers: murky green, transparent orange-yellow, thick red blood, mixed orange with red speckles and streaks.

–>

Tuesday

–>

Your parents nod understandingly as we talk about your fungal infection once again. Our team has been treating it for the past week, but you’re not quite getting better.

Your dad has been talking online with other families whose children with leukemia have gone through similar infections.

“I know I’m not supposed to do that,” he apologizes, then asks, “Is it reasonable to say that our son has a 60 percent chance of coming out of this?”

The resounding silence reminds me of that moment right after a pianist plays the final chords of a concerto, then waits to receive either thunderous applause or a few forced, compulsory claps.

–>

“Well,” the attending physician finally says, “60 percent is a touch generous …”

Your mother starts massaging your swollen legs.

Mentally, I continue the attending’s sentence: “… because, if we could put a number to it, your son’s chance of making it would be more like 10 percent.”

–>

Ten percent.

Wednesday

Your nurse tells our team that she’s noticed a new rash near your bottom.

“Can we see it?” I ask.

Your monitor starts beeping: Your heart rate is going up. Your eyes open half a centimeter, your body starts to shake, and for a few minutes, before you disappear into sedation, I see panic and fear, but most of all, teenage self-consciousness.

“Sorry, baby, they have to look,” your mother murmurs shakily as your dad calmly uncovers your diaper for us.

Before we leave, your parents thank us for coming by, for answering their questions, for trying so hard to get you through this infection. It’s astounding to me that they can express gratitude and kindness towards us when it’s their baby who’s sick. In some strange way, I want them just to yell at us for not saving you. When I walk into your room, a part of me wishes that they’d stare coldly, instead of gathering themselves up, offering smiles and asking me how I am.

Thursday

Your mother’s eyes are rubbed raw and cried crimson. Her shoulders, perky last week, now sag downwards, and her hair is pulled into a listless ponytail. Her hands, though, remain strong: As we talk, they massage everything that love is made of into your legs.

As I listen to your heart, press on your tummy, examine your skin, I see your mother, from the corner of my eye, standing near the bathroom door and repeatedly flapping her hands in the air in absolute despair. She’s biting down on her lower lip. Hard.

I can’t look straight at her. I’ll melt if I do.

Friday

The infection is taking over. You’re getting worse. Your dad, with no hint of resentment, asks, “No changes from your standpoint, right?”

“No,” I say. “No changes.”

In the PICU, no news is often good news, but this is not so for you. It means that there’s nothing more we can add or switch to help you get better. Your mother knows this, too, for when I softly put my hand on her shoulder to express all the words I cannot say, she instantly crumbles and starts crying.

At the end of the day, the fellow and I circle back to the PICU to check on you. That’s when we find out that your family is saying their goodbyes. You’ll be extubated later in the evening.

A miserable silence trails us as we leave and walk down the hall that somehow seems longer and darker today.

Eventually the fellow mumbles, “And I became a doctor because I wanted to make kids better.”

Saturday

Waking at 5:30 a.m., I immediately think of your PICU room. It’s probably empty now, smelling of bleach and alcohol. Its doors are likely closed and taped shut, the darkness within lit only by the occasional pulse of bright purple light from the UV scanner that zaps and destroys any remaining germs in the room.

Your 10 percent has been gnawing at me all week — but today it becomes a perverted symphony of 10 thousand accusations, breeding guilt and doubt. I obsessively replay every visit I had with you, rethink every look your parents gave me, reevaluate every sentence we spoke. I find myself hiding in my room all day, curtains drawn, phone turned off to avoid having to respond to happy text messages, and laptop shut down because seeing social-media selfies makes me irrationally irritated.

Sunday

In the evening, I take a walk around my colorful, tree-lined neighborhood while listening to a song called “Oceans.” It’s about stepping into the waters despite their terrifying depths and crashing waves, venturing into unknown lands despite fear and exhaustion, and standing in the chaos of uncertainty while darkness swirls around your feet. It’s a song about doing all this despite not understanding the mystery of it all.

For it really is such a mystery — one that I will never figure out. In the end, despite having all of science on my side, I will never understand why some patients end up as percentages. I will never understand why, despite all of our fancy tests, antimicrobials and medical advances telling us that you should get better, you just got sicker.

Reflecting upon these last seven days of not knowing, I see that the one certainty was your family’s absolute love for you.

Remembering the incredible privilege of being invited into that intimate space fills me with gratitude. It reminds me of all that I’m blessed with: my textured, experiential, three-dimensional life that’s not confined to a hospital room.

It gives me a renewed determination to press on, to honor and respect your 10 percent and to live changed by you and your family.

Most of all, it provides me with just enough hope to walk through the hospital doors tomorrow morning, a genuine smile on my face, trying my best to improve the percentages for the ones who will next occupy your room.

Evelyn Lai is a nurse practitioner. This piece was originally published in Pulse — voices from the heart of medicine.

Image credit: Shutterstock.com

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