my darling niece Caroline - 18 months and living with cystic fibrosis
I wanted to share a little bit about what daily life is like with a child with cystic fibrosis. Recently, my sister-in-law wrote about Caroline's daily routine:
A normal day these days consists of a morning and evening breathing treatments, which involve a round of albuterol to open her airways (10 minutes) and then 15 minutes of nebulized hypertonic saline followed by 15 minutes of Chest PT (when Caroline is being cooperative!). I was joking with her doctor today that every CF parent should be given a t-shirt that says "I beat my child at least twice a day and three times if they're lucky!" Yes, we pound away on her little chest for a good 15 minutes a session to loosen up that mucus and keep it from settling in and providing a breeding ground for bacteria. We increase these sessions to 3 or 4 per day when she's got a cold or sick and I find myself pounding on her little chest in the middle of the night if her coughing keeps her awake.
Caroline continues to take pancreatic enzymes (about 16-20 pills per day) to help her digest fat and gain weight and as a result she is over the 50th percentile and significantly bigger than her brother was at this age. The reason this is important is that kids with CF who are over the 50th percentile are healthier overall and have more reserves to fight infection. So, we work hard to keep her eating good fat, lots of calories, balanced with really nutritious foods that help build her immunity and keep her strong and able to fight off little bugs that come her way.
We also spend about 15 minutes each day sterilizing her breathing treatment equipment. Since one of the most aggressive bacterias for CF patients is waterborne and naturally occurring, her nebulizer parts have to be washed, rinsed, sterilized and completely dried before using.
The daily drill isn't bad. It's just become routine for us. It's made easier by people like Camille (who cares for Baker and Caroline while their parents are at work) who takes on one treatment a day so that I can get going with work as soon as she gets here. It's made easier by the family who have stepped up to learn how to do the treatments and sterilization to give us a break once in a while. We could not do it without them.
We spend at least one day per quarter in Chapel Hill, meeting with her Pulmonologist, Nutritionist, Social Worker to help us navigate the waters of insurance issues, and Physical Therapist who helps us make sure we're being as effective as possible with her Chest PT. Additionally, any time she's been sick for a while, we make that 2.5 hour drive to see her doctors.
It's precious time each day in a 2 career, 2 child home that we'd love to spend in other ways and that I am sure Caroline would much rather spend playing or running around, but this is the only way we can spend that time. And we wouldn't have it any other way.
We were lucky that Caroline's CF was discovered soon after her birth. She was able to start breathing and physical therapy treatments, as well as enzyme therapy right away, and I feel confident that this is part of what has kept her so healthy.
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The 65 roses project etsy shop is open. 100% of sales will be donated to the Cystic Fibrosis Foundation. As a reminder, $.90 of every dollar donated to the CFF goes to RESEARCH to FIND a CURE for CF.