People who have CF have thicker mucus in their lungs, making it difficult to breathe and leading to bacterial infections. A huge chunk of our kids’ lives is spent doing AIRWAY CLEARANCE, working to break up and clear the mucus in their lungs. Both started with manual CPT (chest physical therapy, i.e. Matt or I pounding on their chest, sides, and back with a percussor for 30 minutes). They now use a shaking vest for thirty minutes in the morning and thirty minutes at night. When they are sick, they are hooked up to this machine 3-4 times a day, even if it’s just a cold or a cough.
The counter on Lucie’s vest machine currently reads almost 3,100 HOURS! Xavier’s hour count is slightly lower because we had to send his back to get fixed a couple of years ago. These numbers don’t include the hours that they have spent on the vest while inpatient or the many hours spent doing manual CPT before we got vests.
Before he started Trikafta, Xavier also used an Aerobika which is a PEP (positive expiratory pressure) device that creates vibrations in his airways when he breathes out in long breaths. When he was hospitalized, he also benefited from IPV (intrapulmonary percussive ventilation) which puffs air into the airways.
Treatments are EVERY DAY, twice a day minimum: birthdays, holidays, vacations, travel days. (I will say that since starting Trikafta, we have very, very occasionally missed one of those treatments if our schedules are crazy - maybe 2-3 times a year.)
All in an effort to keep mucus and infection out of their lungs!
What could we do with an additional 400 hours a year?