The CF Caregiver: An Honest Morning Routine
It's just about impossible to keep a steady daily routine when you have a baby with cystic fibrosis (or a baby at all, really). Here's what an honest morning routine looks like from a CF caregiver's perspective.
6:30 A.M. – My alarm rings. I open my eyes and think about all the things I can accomplish in the hour before the kids wake up if I get myself out of bed right this very second...
7:15 A.M. – I awake to the sound of my 1-year-old talking loudly to himself in the crib. He’s saying “Bye! See ya!” so I hope he’s still in there and not really leaving. Do I have time to shower? I should get his chest PT done first and hope the 3-year-old stays asleep a little longer.
Starting our daily routine
7:25 A.M. – Finally get out of bed and tend to the 1-year-old whose diaper has leaked pee through his pajamas and into his sheets. I’m less worried about that and more focused on not getting kicked in the boob as I change his diaper and clothes while he screams “Noooo! Daddy!” right into my eyes. Good morning to you too, son!
7:35 A.M. – With the younger one dry and dressed, we head downstairs for his morning treatment. Upon seeing the Xopenex inhaler and spacer, he tells me “Noooo! Eat!” and tries to open the fridge. I know it’s best for him if we get treatment done right away, so I explain we have to do that first. He’s one and doesn’t care and runs away.
7:40 A.M. – He’s finally taken two puffs from the inhaler and we settle down with our percussors for manual chest PT. Wait, does he stink? I try to get started before giving him a new diaper, but he’s miserable and yelling “Noooo! Poop again!” so we head upstairs to change the poop.
7:50 A.M. – More boob kicking, this time while I try to wipe and dodge and keep him clean. He ends up needing new clothes anyway.
Can we do chest PT with the baby now?
8 A.M. – Back downstairs for chest PT. He’s calmer now so we’re off to a good start.
8:04 A.M. – 1/6th of the way through PT and the 3-year-old is yelling for Mommy. I hear Daddy get out of bed and, foolishly, offer to help. The older one hasn’t let Daddy help him with anything ever, but maybe this morning will be different? I try to continue with treatment, but the younger one knows everyone is awake upstairs and I think he stinks again anyway.
8:10 A.M. – I go to the older one’s room and his face lights up. He loves his little brother and he loves me and he doesn’t love Daddy, so that’s why he was screaming. I should have known! I explain that the baby needs a diaper, so maybe Daddy could help him go to the bathroom and pick clothes for the day. That’s the opposite of what everyone wants, so when the screaming starts again, from both kids this time, Daddy knows to just take the baby for his third diaper of the hour. Did I make coffee yet?
8:25 A.M. – Even though it has been almost 14 hours since he used the bathroom, the older one insists he doesn’t have to go. We need to get treatment done, and I haven’t even thought about breakfast! The baby is changed and the unwinnable potty fight has gone on long enough, so we head back downstairs.
8:27 A.M. – Just as I restart percussion on the baby, and we hear Daddy turn the shower on, the older one has to pee. Of course, his step stool and potty ring are in the bathroom upstairs and, of course, he can’t do it by himself and, obviously, he really needs his brother to be in the bathroom with him while he goes, so we all head back upstairs.
8:29 A.M. – Bathroom party! Sorry, Daddy. Maybe you can have privacy when they both move out.
We're still not done with CF treatment?
8:35 A.M. – Back downstairs since I NEED to finish the baby’s treatment! Is it okay if it’s all spaced out like this? Is this how it happens every morning? Did I make coffee yet?
8:38 A.M. – I find a YouTube video on my phone to hypnotize everyone just long enough to finish PT. It’s probably about Elmo or learning colors so it’s fine, right?
8:50 A.M. – Treatment’s done. I don’t have time to shower, but I do finally make a cup of coffee. Two rooms filled with toys should keep everyone occupied long enough for me to continue our daily routine, make breakfast, and get the rest of the baby’s cystic fibrosis medicine together.
8:51 A.M. – I am wrong. It’s not time for toys. Both kids let me know, loudly, that they’re hungry and apparently this message won’t get through unless both of them are crying and touching me. Actually, it would be best if I could just hold them both right now.
9:15 A.M. – Somehow, oatmeal with peanut butter, strawberries, the older one’s water, and the younger one’s milk, complete with some salt and his morning Miralax dose mixed in, all end up on the table. The older one starts eating right away while I prep the baby’s applesauce and Creon. That fast, he has reached the milk on the table and downed half of it. I scoop him up and give him his enzymes while mentally preparing for the inevitable greasy poop explosion later in the day.
We made it!
9:20 A.M. – Daddy comes downstairs to a surprisingly serene breakfast scene and compliments me on my amazing parenting skills. I try to remember if I actually did put Miralax in that milk.
9:45 A.M. – The kids are fed and cleaned-up so now they’re happy to hang out in their two rooms filled with toys. Actually, they both want the same toy and actually, it’s not a toy at all; it’s an attachment to the vacuum cleaner. As I dose out the baby’s Famotidine, I find my coffee, now room temperature, on the counter. “Just remember to share!” I call out as I swallow my first sip.
What does your daily routine for a baby with cystic fibrosis look like? Share in the comments below!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?