Cystic Fibrosis for One Day: A Brave Kid

Note: This is the third essay in a series about an “empathy exercise” organized by Smart Patients. Catch up on our story so far: Cystic Fibrosis for One Day: Early Morning and It Gets Real.

I shadowed a mom and her 5-year-old son with CF from afar for 24 hours.

It taught me more than I could have imagined about living with a life-shortening disease — and about myself.

Erin and Drew were just told that he needs to have a PICC (a peripherally inserted central catheter) placed today so he can receive strong doses of an antibiotic straight to his heart.

Drew, age 5, knows what this means: an uncomfortable procedure followed by two weeks of not being able to swim or go to gymnastics (which, by the way, are therapeutically important for him, too).

What follows are screen shots of all the text messages Erin and I exchanged throughout the day.

Erin has an elaborate reward system set up at home to try to get Drew to eat, often to no avail. Today, this awful day, Drew says he is hungry but Erin can’t let him eat anything until after the procedure.

Erin is an experienced caregiver so she knows to get any other hospital “errands” completed before they go to the isolation room, where they will sit for a full hour, waiting.

Once they are in the isolation room, they are theoretically safe from germs brought in by other people. The hitch is that it’s late in the work day and any number of people may have also used this room before them. I am looking at those shiny floors with suspicion. When were they really last disinfected? That’s the level of paranoia that Erin has to maintain in order to protect Drew.

After waiting in isolation, they head to the emergency room. All bets are off in terms of cross-contamination and germs in the ER.

When Erin and I had discussed what her day would hold the night before, we thought that Drew would be in school for the afternoon. I had two conference calls scheduled for that time and now I am feeling like a heel for keeping those appointments. Erin doesn’t have the luxury of a time out from this terrible day. Why should I?

Erin received permission from all the clinicians to livestream the procedure and a small group of us watched from afar as the team inserted the catheter. It was amazing to watch Erin comfort Drew, help the nurses understand his pain level, and yet hold her phone steady.

There was an online “cheer” on Twitter for Drew when it was all over.

In addition to the threat of germs, the ER is a nutty place for kids to be. For those not familiar with the term, “po po” is police. There are officers stationed outside the room next to theirs. I’m sadly familiar with this scene since my son Nate was a frequent ER visitor when he was younger, before we had a handle on his food allergies.

We took a break from texting during dinner. They had their neighbors over for Jake’s third birthday celebration. Normally Drew would be tumbling around with the other kids but because of the medications he’s on, his balance is off and he can’t play like he usually does.

Caregivers like Erin often don’t have time to take care of themselves. I wish I could give her one of my extra hours from the day.

Sometimes a kid will surprise you at bedtime with a profound question. This is one of those times.

If you’ve been following our story from the beginning, this is a “we’ve come full circle” moment. The night before, while Erin and I talked on the phone and mapped out a much less dramatic day, she was sterilizing Drew’s nebulizer equipment.

CPT stands for chest physical therapy. An adult claps with a cupped hand on the back, chest, and sides of a child with CF to loosen the mucous in their lungs. Then the child coughs and spits out the mucous. It is a basic and essential airway clearance therapy, part of Drew’s daily life.

I emailed Erin one of my favorite poems, which I often read right before I go to sleep. I’m desperate to give comfort in the only way I know how, from so far away: send a bit of beauty.

“The Sun,” by Mary Oliver

Have you ever seen


in your life

more wonderful

than the way the sun,

every evening,

relaxed and easy,

floats toward the horizon

and into the clouds or the hills,

or the rumpled sea,

and is gone —

and how it slides again

out of the blackness,

every morning,

on the other side of the world,

like a red flower

streaming upward on its heavenly oils,

say, on a morning in early summer,

at its perfect imperial distance —

and have you ever felt for anything

such wild love —

do you think there is anywhere, in any language,

a word billowing enough

for the pleasure

that fills you,

as the sun

reaches out,

as it warms you

as you stand there,

empty-handed —

or have you too

turned from this world —

or have you too

gone crazy

for power,

for things?

And the day is indeed done, as is this series of essays. Thank you for following along!

To learn more about CF, visit the Cystic Fibrosis Foundation’s site.
To follow Erin’s story, check out her blog or follow her on Twitter.

The Storify I created captures what we posted to Instagram and Twitter throughout the day. You can also check out other people’s Cystic Fibrosis For One Day experiences by browsing #CF1day on Symplur.

As always, please let us know if you have questions and hit that recommend button to spread the love.