A Look Into Our Daily Routine

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
Vest, Albuterol
Snack and more play time or other activities
Lunch with another can of Pediasure
Nap
Yet another can of Pediasure, then about 30 minutes of play time
Vest, Albuterol
Dinner
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.

Routines

I would like to share a little bit about what our days are like with a child who has CF - not as a bragging point (so please don't think that), but to help educate and offer a little perspective.  I certainly never thought a ton about many things that we've been through.  I certainly was aware of them, but sometimes you don't realize the full situation until you've been through it.  Ok, stepping down off the soapbox.

Our days are pretty structured, and there are many things that have become routine: Judith gets lots of play time/interaction time, but she also has new therapies and medicines that need to be squeezed into the day.  She takes an iron supplement daily (that's for the prematurity, and I'm hoping we can wean her off of that in the near future), along with a special vitamin designed for people with cystic fibrosis.  I honestly don't know which was worse: the smell from the Poly-Vi-Sol with iron that she was on from the beginning in the NICU, or the smell from the "cherry flavored" Vitamax that she now takes.  Oh.my.goodness.  It's more like rotting cherries or something equally as gross!  I am SO glad that I can put it into her bottle of formula and give it to her that way, because I doubt she'd take it otherwise!  Blech!

She's still on the Zantac for reflux, and the only thing that changes with that is the dosage - they usually have to increase it once she reaches a certain weight so it continues to be effective.

Twice a day, we have to do 2 special things for her CF.  Judith has a maintenance inhaler (Albuterol), and gets 2 puffs at each dosing time.  She does pretty well with it - most of the time, she'll cooperate and will even "talk" to me through the mask of the spacer (she's been known to lick the valve where the inhalant comes out...), and there are times when she fights taking it.  The other thing we have to do is chest physiotherapy, or CPT (or chest PT).  This is an important therapy to do: it is the one where we clap the mucous out of the small airways in her lungs and move it to the large airways so she can cough it up.  In a person with CF, the body makes abnormal mucous, and it tends to be thicker and stickier.  If it remains in the small airways, infection can set in and cause lung damage.  Clapping it to the large airways helps the person with CF cough it out of the lungs, therefore helping to reduce the risk of infection (granted, infection can still set in, but it's a good preventative measure).  It takes about 24 minutes to do the actual therapy, but can take us up to a half hour to complete it if Judith is really fighting it.

Right now, we can escape the adventure of adding digestive enzymes to every meal she takes, because her pancreas is functioning normally.  Knock on wood that it continues to do so.  They will monitor this and check function every so often.

Everything goes smoothly, and it really doesn't take a lot of time to do.  We have a board to keep track of everything, but I'm at the point where I can generally remember dosing amounts, etc.  It was super overwhelming in the beginning, but just like everything else we've encountered, we're learning to adapt.