Top 10 Tips for Road Trips With Your Child With CF

Traveling with a kid with cystic fibrosis is better if you plan ahead, get organized, and create a schedule -- but always be able to roll with the punches if that schedule changes.

| 7 min read
Shana-Bull-headshot
Shana Bull
Road-trip-child-with-cf-rectangle

Six years ago when I was pregnant with my son, my husband and I would talk about how we wanted our family to be well-traveled. Instead of just talking about the Grand Canyon, we wanted our child to experience it firsthand. We planned out road trips across the country, as well as around California, where we live.

Two weeks after our son, Ryeson, was born, we found out he had cystic fibrosis. At first we thought that all our plans for family life would change.

And for the first few years, they did.

Our son is pancreatic insufficient, and when he was a baby, he was in the 5th percentile for weight. He was on a strict feeding schedule, and our lives revolved around when he would eat. Every day, it was a chore to get him to eat his enzymes and the food we put in front of him.

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We would occasionally go on a few road trips from the San Francisco Bay Area to visit my in-laws in Long Beach. The eight-hour road trip was a lot at first. Dealing with extra feedings and his nebulizer treatments meant that any road trip we took would have to include several stops for us to feed him; I pre-planned these stops down to the place and time.

Once at our destination, we would either stay with family or in a hotel for the weekend. All our activities were scheduled around Ryeson's feeding and nap times.

Getting a G-Tube Gave Us Flexibility and Comfort

When Ryeson was 2 1/2, he had surgery to get a G-tube put in. That changed everything for us.

Instead of eating several times throughout the day, we only had to do two big feedings and then he could eat snacks in between. This allowed a little more freedom when it came to family travel, and it eased the anxiety my husband and I felt about having to feed Ryeson enough for him to grow.

After his feeding-tube placement: We were not stressed out on a daily basis, which meant day-to-day life was a little easier -- and road trips around California and Nevada became even more common.

Getting an RV for Family Travel

In the summer of 2020, like many other families, we decided to buy an RV because we were feeling the impact of being stuck at home due to the pandemic.

Before the pandemic, we had plans to fly to Hawaii with the family (Ryeson's first flight), but we couldn't risk it. Instead, we decided to take the time off from work we had already planned and use it to go camping.

We knew we could travel within a few hours of our home, go camping, stay socially distanced from other people, and have an organized place for all his nebulizer treatments and feeding tube accessories.

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So, we bought an RV-thankfully we found a smaller one that worked for our family of three (plus two small doggies).

Our first RV trip was an hour away, and we quickly realized that while we packed everything Ryeson needed for his nebulizer and feeding tube, we had forgotten a few essential things (like chairs for outside).

It was just the three of us, so we were able to be on our own schedule, buy what we needed, and have a lot of fun. Ryeson was sad when he saw other kids riding their bikes together, but we told him he had to stay in the campsite because of social distancing. We had enough fun activities planned (like going to the beach) anyhow, and he really enjoyed that first camping trip.

We have traveled around California since then, camping in the Sierras, just south of Lake Tahoe, and right on the beach near Pismo Beach in central California.

Just like camping in an RV, traveling with a kid with cystic fibrosis is better if you plan ahead, get organized, and create a schedule -- but always be able to roll with the punches if that schedule changes.

Tips for Road Trips With Your Child With Cystic Fibrosis:

  1. Create a travel checklist of all the supplies you need. Make sure to pack enough for your trip, and then add three or four days' worth -- you never know what's going to happen
  2. Create an emergency kit with everything you need for their feeding tube, etc., and take that with you any time you go farther than an hour away from your house.
  3. Have an emergency contact form in your emergency kit -- or easily accessible in your RV -- just in case something happens to you. Have names and phone numbers of emergency contacts, doctors' information, and information on how to get enzymes or feeding tube accessories if needed.
  4. Triple-check everything before you leave for your trip. I once forgot enzymes and only had enough for a few days in my purse. We had to order some, and they were delivered to a local pharmacy (which took two days, so we had to limit the amount of enzymes he ate).
  5. Make sure feeding supplies and the like are easily accessible in your car or RV on the road trip.
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  6. Whether you are traveling in an RV, staying with family, or booking a hotel room, organize all your child's cystic fibrosis accessories in one easy-to-access place when you first arrive at your location.
  7. Plan your days ahead of time, but also be flexible. It's important to build extra time into your schedule because everything seems to take a little longer with a small person in tow. Don't overbook your day, no matter how many tourist attractions you may want to see while on vacation. This will help lower your stress levels and ensure that you can focus on having fun.
  8. Don't go during busy times. This is my favorite piece of advice. When planning your trip to a tourist attraction, restaurant, or even the grocery store, try to avoid going when everyone else will be there. I always try to arrive at least 15 minutes before places open so I can find parking and get our tickets. That way we can see the attractions we want to see without the huge crowd.
  9. If you have more than one kid, don't seclude your child with cystic fibrosis while they are doing their nebulizer treatments, eating, etc. Often, we literally roll his feeding tube equipment outside so he can eat dinner at the picnic table with the entire family.
  10. Keep additional hand sanitizer and wipes with you at all times (a given for most CF families).

We have several road trips planned for the upcoming summer months, and we are excited to create memories with our family using these tips to mitigate any stress and help us feel prepared.

Interested in sharing your story? The CF Community Blog wants to hear from you.

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Traveling with CF
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Shana is a best-selling children's book author and digital marketing educator who is passionate about connecting online, elaborate cheese boards, rosé wine, and traveling with her family. Find her at shanabull.com and randallthebluespider.com, or on Instagram @sharayray and @RandalltheBlueSpider.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.