Not Enough Hours in the Day

Mornings are usually the most hectic time in our household. On top of getting ourselves up and ready for work, we also help the girls get dressed, fed, washed up, and out the door so we aren’t all late to everything. As any parent or caregiver knows, it’s a lot.

But add in one more step in the process: treatment. These are non-negotiable 30-minutes of time twice daily that need to be accounted for in our morning and evening routine. It’s the morning that are tough, and I assume will only get tougher as she gets older and school starts even earlier.

Morning versus evening routine

Right now, her bus arrives at about 8:20 every day. In order to get her out of the house in a timely fashion that doesn’t involve us constantly hassling her, we wake her up around 6:45. That gives her time do her morning duties: brush teeth and hair, use the potty, get dressed, do her 30-minute treatment, eat breakfast, get socks/shoes/coat on, and walk the 2 minutes to the bus stop. That might seem like a lot of time to do these things, but if left to her own devices, Margo tends to dawdle.

In the evening, it’s a little bit easier if we must push against the clock. The worst thing that will happen is Margo will get to bed slightly later than normal. But this can backfire and cause a vicious cycle. If her evening routine is pushed back, that affects her bedtime and makes her tired in the morning, making it harder to wake up on time.

CF treatment time transitions

We try to make the transitions to treatment time as seamless as possible, with plenty of warnings about when she needs to stop doing her current activity and switch over to treatment. We also make sure to give her options when it comes to her treatment and her schedule. For example, does she want to do manual treatment or vest? Does she want to play a game on her tablet or watch a show? In the evenings, does need to do three things: bathe, eat dinner, and do treatment. If time allows, we often let her decide what she does first.

Additionally, she does her nebulizer in the evenings with two different inhaled medications. Preferably she would do this while she does the vest so they both happen within that 30-minute window, but often she prefers to do them separately because the motion, sensations, and noise of both machines at once on her body are a lot.

On the weekends or during week when we have activities, while we prioritize treatments, we also don’t let them get in the way of her having fun. This usually involves some planning ahead and figuring out when we can fit in treatment. Best case scenario is we do it before the activity, especially if it’s in the evening. It’s a good feeling to be able to leave the house knowing that her treatment is finished and she can come home and come to bed.

Planning to a T

So how do we do it? One word: Planning. I wish I had great advice to give to parents struggling with balancing life and cystic fibrosis, but I often feel like I can barely keep my head above water. By nature, my husband and I have very go-with-the-flow personalities, so adjusting to these stricter timelines was an adjustment and continues to be so any time we enter new phases of our lives. Everything in our lives is planned because when we don’t plan accordingly, medications risk being missed or treatments occur at 9pm. We can’t afford not to plan. Something to note is this is our everyday routine, just to keep her at a baseline level of health. When Margo is battling a lingering cough or cold, the schedule goes out the door and its treatments and medications around the clock.

And while I try not to dwell on this, it often doesn’t seem fair. I don’t want my little girl to have to fit in 30 minutes of treatment in the morning. I don’t like waking her up so early or risk having to rush her in other ways because treatment is a necessity. My other daughter naturally wakes up at 7:30 and is typically ready to go by 8am. I would love that reality for both of my girls - quick, easy mornings. But as CF caregivers know, there is nothing quick and easy when it comes to cystic fibrosis. So we plan, give Margo options when we can, and make sure that while the routine is prioritized, it doesn’t get in the way of living.