The CF team is one part of the core care facilitators for CF patients. The patients themselves and their parents/caregivers or spouse/significant others are the other part of that core. Compliance is huge for patients to be able to stay as healthy as they possibly can, to try to ward off as many bigger complications for as long as they can, and to try to live a long, full life.
Compliance can be challenging at all stages of a CF patient’s life. One benefit I recently discovered is being able to get a glimpse into potential future battles we may have with Judith; I’m part of a Facebook group for CF parents, and the children’s ages vary greatly. I’ll often read through posts about the challenges in dealing with teens, and file the tips away in the back of my mind in case we have the same problems in the future. Of course there are challenges with kids Judith’s age as well, and believe me there are days when I want to pull my hair out trying to keep her compliant when she is trying her hardest to get out of doing a treatment!
One thing that helps keep us in compliance is sticking with a solid routine. Our daily routine is strict, but also allows for wiggle room depending on what’s going on that day. A general day for us looks like this:
Wake up, have a can of Pediasure in a straw cup, mixed with the day’s dose of Miralax
Random “get ready for the day” stuff that everyone does
Have breakfast with another can of Pediasure; take vitamin
Play time for about 60-90 minutes
Snack and more play time or other activities
Lunch with another can of Pediasure
Yet another can of Pediasure, then about 30 minutes of play time
Bath, bedtime routine, bed
Most of that is nothing out of the ordinary for a preschooler, and in fact the majority of Judith’s day consists of very typical activities. The differences are in the treatments. We’re fortunate because she is not on as many medicines as a lot of other CF patients, so it significantly cuts back on treatment times. However, The Vest alone takes a full hour out of each and every day, and that’s when she isn’t sick. Sometimes it can be hard and even annoying trying to plan appointments and activities around her treatment times and accounting for them, but it’s something you get used to. Now, when Judith’s on “sick plan,” things are even trickier. Treatments will at least double, which means she’s spending a good 2 hours every day on her Vest, and taking puffs of her Albuterol every 4 hours (again, though, the time is significantly less than it is for some patients because we use the inhaler with her, and don’t nebulize it). Antibiotics are also added, which can often be a good 15 minute battle depending on what form they come in. If she has a pseudomonas infection, TOBI would add an additional 40 minutes (approximately) to the plan. I also know that once we add hypertonic saline and pulmozyme to her daily meds, treatment times are going to go up even more.
It’s a lot, and it’s overwhelming, especially if she’s sick. We’re hoping that by fostering good compliance strategies now, it will help with the compliance battles we may end up facing as she gets older.