A look at a "normal" day with Cystic Fibrosis.

A Grandmothers perspective.

I recently had the opportunity to take care of my two granddaughters who live out of state while their mom and dad took a much deserved vacation. The oldest of the girls is a 12 year old with CF. Ive taken care of the girls in the past, but it was always during holidays or vacations when the pace was a little slower. This Spring I got a look at what a family goes through when managing a chronic illness while also managing the busy life of a 7^th and 4^th grader.

The treatment routine.

The mornings are the most hectic time for most school children and even more so when also managing cystic fibrosis. Every CF patient has their own specific regimen based on symptoms. My granddaughters routine requires a complex assortment of oral medications, respiratory treatments and physical therapy (PT). The day starts with the usual struggle to get her out of bed. CF takes a lot out of this girl and shes slow to wake up. Her parents have things figured out for spit-second timing allowing her to get as much sleep as possible. First are her metered dose inhalers (MDI) of Albuterol and Flovent. The Albuterol is used to open her airways and the Flovent is an inhaled steroid that helps reduce inflammation in her airways. Shes old enough now to administer her own inhalers as she gets dressed and ready for school. Within 15 minutes she is hooked up to her "Vest" for physical therapy (PT). PT is used for airway clearance. The vest is quite literally a vest that inflates as it is hooked to a machine. It vibrates her chest to loosen the thick mucus that clogs her lungs. After the session of PT she gets a nebulized antibiotic. Depending on the medication shes on at the time this can take 10 minutes. She is continuously on at least 1 inhaled antibiotic due to resistant organisms that she is colonized with. During my stay she is taking Amakacin, which is normally injected but doctors will sometimes prescribe it for inhalation to deliver the medication directly to the lungs. Then if all goes well she has time for a granola bar as her ride pulls up to take her to school. When she walks out the door with her violin and book she looks just like any other 7^th grader.

This scenario for the morning is repeated 2 more times during the day, but the pace can be a bit more relaxed. She gets a treatment after school and before bed. All in all this child spends about 3 hours out of every day with her CF care. Since Im her grandmother Im allowed to throw in the fact that she still manages to make the straight As!

Ive really enjoyed spending time with my granddaughters, but at this pace I believe Ill be taking a well deserved vacation myself!

- Peggy Thompson