A Day In The Life: Pre-Teen Caregiver Edition
When our son was first diagnosed with CF, what began as a new parent schedule shifted gears to a caregiver schedule. Everything in our life could be measured, lined up, sanitized, counted, written down, and done in specified increments of time. The clock ruled our lives for a long time. There was no feeding on demand or sleeping when the baby slept. We had to write every dosage, feeding, weight of diapers, and treatment time down. I still have the notebooks that we journaled the first three years of our son's life around here somewhere.
Our pre-teen CFer
Our son is now on the verge of becoming a teenager and our lives as caregivers look a lot different now. More responsibility has been handed to him. There is less to measure and we no longer need to journal calories and treatment times every day. There is still a lot to remember. Even though he has taken the reins of some of this himself, we still feel the need to stay on top of things.
Just like when he was younger, he still does his vest twice a day. This means that we all get up extra early in the mornings so that he has time to do 20 minutes on his vest before school. This is usually done while we are watching the morning news. He has been known to fall back asleep during this. Actually, we all have a time or two.
When he gets home, he does another 20 minutes before starting homework. Homework and the vest do not go together, as the vest is too distracting. When he was younger, he would do his vest while watching cute little YouTube videos. Now he does it while playing Call of Duty. A lot sure has changed over the past 12 years!
Every other month he does the TOBI Podhaler, which is quick but really effective. He did Tobramycin with a nebulizer for years, which as you know is both time-consuming in treatment time and cleaning time. We discovered the Podhaler and never looked back. It still takes some time to do and he has to remember to do it twice a day: before and after school. While it might not take as much time as a nebulizer treatment, it still needs to be remembered to get done.
We carry a bottle of enzymes with us wherever we go. There is always a bottle in each of our cars, in my purse, at homes of those that he frequently visits, and of course at school.
There is also the Trikafta that he takes twice a day. We do not sort any of his Trikafta out because I prefer that we keep it in the blister pack so we can make sure that each of his daily dosages was taken. It's just for peace of mind; if we took it all out, we wouldn't know.
Gaining weight has always been a battle when it comes to his health. We have tried Scandishakes, acid reflux medication that is supposed to increase appetite, Benecalorie, and Boost shakes. The only thing that has worked has been his high-calorie Boost shakes. He lived on them for a long time. They were the only source of calories that he would consume for days at a time. He was gaining, or maintaining, weight at a good rate but knew nothing about food. He didn't have a favorite and had only tried a handful of things.
Because of this, we stopped ordering them and let him branch out. We had a stash hidden away in case we were away from home for an extended period of time and he needed to eat but, other than that, they were kind of off-limits. Since doing this, he has started cooking on his own, shown a lot of interest in a lot of different foods, and can go to a restaurant and actually pick something out to eat. He is still gaining weight and the shakes are there if and when he needs them, but we took the eating training wheels off for him and he has thrived.
Things might look different now that our son has gotten older but the goal is the same: teaching responsibility for when he takes all of this on his own and keep him as healthy as possible.
Do you have a pre-teen with CF? What are your tips for caring for them?
Are you a patient or a caregiver?