Cystic Fibrosis for One Day: Early Morning

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.

Drew and Erin

This “empathy exercise” was organized by Smart Patients, an online community where patients and caregivers learn from each other.

What follows are the text messages we exchanged (shared with Erin Moore’s permission):

Erin and I talked for an hour the night before we planned to really begin. We went over the schedule for the next day, what to bring, how to prepare for a day caring for a CF kid. She was sterilizing Drew’s nebulizer equipment, which she does every night.
I have a son, now 11, with life-threatening food allergies and when he was a toddler we kept a hospital “go bag” by the door. Packing this imaginary go bag brought tears to my eyes — my first clue that this was going to be an intense experience.
I chose my childhood teddy bear to stand in for Drew. Erin said I’d need to place a surgical mask on my “kid” when we entered the hospital to protect him from germs. People living with CF have to be incredibly careful — there is no margin for error when it comes to infections.
I set my alarm for 5:40am — a full hour earlier than my usual wake-up time. But we have to get a breathing treatment in before we leave at 7:30am for a doctor’s appointment.
Erin’s shirt says it all: “Doin’ it for Drew.” I should note that Erin has 3 other kids, none of whom have CF.
I’m not one for early-morning selfies but I made an exception, clutching my coffee mug.
The TV has to be cranked up to be heard over the machine that administers the breathing treatment.
I thought I was doing OK on time until Erin let me know that I couldn’t leave my kid alone.

First stop-me-in-my-tracks revelation:

How is it that we ask people to implement complex home treatments and yet we do not invite them to co-design protocols?

The pictures she’s sending are a revelation. The medication regimen is so complicated!
I see Erin’s anxiety as an evolutionary adaptation. It seems to me that moms who look out for threats — real and imagined — may be more likely to keep their kids healthy.
I was still in the “I got this” stage of the day, gamely making pancakes from scratch (which my actual kids LOVED).
My heart broke a little, reading this message. Drew is only 5. Imagine how much more self-conscious he will get as he gets older.
CF messes with people’s digestive systems and getting Drew to eat a high-calorie diet is a daily challenge.
Right about now I’m realizing that I have fallen behind — I’m not even dressed yet! The “milkshake” is actually Ensure Plus, a way to get more calories into Drew.
The one time I felt like I was truly helpful.
Erin had sent a very detailed medication list to the nurse. Guess what? It didn’t matter. She was asked no less than 4 times about Drew’s meds — and each time they had the wrong list to start.
Drew is an experienced germaphobe — mask on, using only his elbow to press the elevator button.

Second revelation:

Erin’s anxiety reminds me of a food allergy adage: People will point at you and whisper, “There goes that paranoid mom.” It is then and only then that you are doing enough to protect your child.

They are in a general waiting room, not yet in isolation, so anyone coming in with a virus, even if it’s just the common cold, could adversely affect Drew’s health.

Phew!

That set of screen shots represents just the first few hours of the day. There are many, many more — and the day takes a dramatic turn, unfortunately.

Want to read more? Do me a favor: Write a comment (click on that little plus sign in the right margin) or a response to let me know what you think of what I’ve posted so far. Or just hit the recommend button. I’ll post more if people find this as compelling as I do.


Update: The next installment is live! Cystic Fibrosis for One Day: It Gets Real.