It’s something that the CF community is accustomed to. It can sit on carts in the living rooms, or get packed away after each use, it comes in all different colors and sizes — but always a vital part of a CF routine.
When our daughter, Louisa, was diagnosed with cystic fibrosis at 18 months old, we started our treatment plan with manual chest physiotherapy. We were given a set of percussion cups and the respiratory therapist showed us the six places on her little body we needed to do percussions on for 20 minutes 2 times a day.
At one of Louisa’s follow-up diagnosis appointments, they measured her for a vest and placed the order. We were told it would arrive in three to four weeks once the insurance approval was processed. We continued with our manual chest physical therapy (CPT), wrestling a busy toddler to try and hold semi-still for 20 minutes, twice a day.
The month following Louisa’s diagnosis was a blur of establishing a routine of nebulizers and enzymes and therapy treatments — we were going through the motions without really taking the time to mentally process the fact that our child had just been diagnosed with CF.
On a Sunday afternoon in August 2020, the respiratory therapist came to our house to deliver the vest and teach us how to use it.
I’ll always remember the moment we saw our tiny girl connected by hoses to this machine that would shake her aggressively. That was the moment CF became real to me.
We’d dealt with medications and nebs for colds in the past, but I was not prepared for the emotions caused by this large medical device that was now so present and important in our lives.
Louisa adjusted quickly to this new routine. She sat for a 30-minute session from day one and has continued to tolerate her vest treatments remarkably well. We’re coming up on two years since the vest arrived at our home. It’s come with us to multiple states and on its first flight this past spring. It’s been used outside, at daycare, in the back of the car on road trips, at grandparents’ homes, and in almost all the rooms in our own home. To date, we’ve logged 1436 sessions or 43,080 minutes!
While we hold out hope for a day where Louisa will not need to be strapped into medical devices multiple times a day, in this moment we’ll continue to use and be thankful for this trusty device that’s so integral in keeping those little lungs healthy.
Interested in sharing your story? The CF Community Blog wants to hear from you.