Traveling as a CF Family

The first time traveling with young children can be overwhelming for any parent. This is especially so for Cystic Fibrosis families. When packing for a trip, forgetting an item or two is usually no big deal. However, when so many items are critical for your child's treatment and medication routine, the pressure is on. Having braved the world of travel with my children, the youngest having CF, I am excited to share what helped us remember all the things and enjoy our vacation.

When choosing lodging for your special trip, it's important to factor in a couple of details:

•  If you have refrigerated medication, you’ll want to have access to a refrigerator or cooler in your hotel, Airbnb, cabin, etc. 

• Pinpoint a clean water source to wash nebulizer equipment (and hands!)

• Research your location and ensure you know where your child can receive medical attention and pick up prescriptions- in the rare event it's needed. 

We love Airbnb's for the added space and comfortability for treatments, but we have stayed in hotels and made it work just as well. Remember, anything is possible with adequate preparation and planning. While travel as a Cystic Fibrosis family may feel more intensive at first, I promise it is so worth the extra time and effort.

Airplanes and airports; the very notion made me cringe as a new CF mom. The notoriously germ-filled virus hubs were the last place I wanted to bring my toddler with CF. However, when sandy beaches and beautiful memories were on the other side, I suited up in preparation to step into the unknown. Step one: preparation. I have found that preparing weeks in advance for airline travel can be advantageous. I recommend signing up for TSA Cares- a complimentary assistance program for medically complex and disabled passengers. When submitting an application you may request special assistance/an escort through security. Before we traveled, we informed TSA Cares about all the equipment and medications we would need to carry onboard. I always insist that agents change into clean gloves before examining our CF haul, to prevent any added bacterial/viral contamination. TSA Cares assistance has proved to aid in a seamless security experience, and the special consideration is always a plus. Reach out to your CF Clinic a week or two before your trip, and they will provide a travel letter detailing that your specific medically necessary items MUST be accessible to you in flight. 

Creating CF item checklists to go over during various points in your travel journey will ease anxiety about forgetting any medical valuables. We review our checklists when packing, before leaving for the airport, and during various checkpoints throughout the travel day. This brings me to step 2: packing. I encourage your family to bring everything CF-related (meds, nebulizers, vest, etc.) on board as carry-ons. For me personally, the risk of baggage getting lost and then not having access to my child's medications and equipment is just not worth it. Typically, each ticket holder is allowed to have one carry-on suitcase, as well as a backpack/under-seat storage bag. There are exceptions for medical equipment, it just depends on the airline. For Southwest, American Airlines, and Delta we have had no issues carrying on all of our medical equipment. We purchased a large hybrid between a suitcase and backpack that fits under the seat, and we store all medications in this bag. For spacers and neb cups, we double bag them into large gallon zip locks (to add a layer of germ protection should a TSA agent examine them) to store in the backpack as well. A small lunch box with an ice pack is a fantastic way to store refrigerated medications. Lunchboxes can easily be clipped onto a backpack and unclipped for inspection.

Bringing extra Ziploc bags is a safeguard for longer travel days- as you can fill them with ice and ensure your meds stay properly chilled should your ice pack thaw. We carry our Respirtech vest in its manufacturer-provided rolling bag and store it in the overhead baggage area. Finally, we bring one small carry-on suitcase that houses our Papablic sterilizer and Philips compressor. Many families use microwave sterilizer bags, or the boiling method for a more low-profile nebulizer disinfection travel routine. Whew! That's a lot, not to mention the snacks and bag of distractions needed to keep kids entertained on a flight. Yet, it's doable, and so much easier with each consecutive flight.

Now that the hard part of packing, organizing, and managing the transportation of supplies is over; we can move to step three: Navigating high-traffic airports and airplanes. When arriving at the airport we check all our clothing/toiletry bags, and the weight is instantly lifted. Getting all your bags to the checking kiosk can feel like quite the journey- I highly recommend a luggage cart if you can access one. Bringing copious amounts of hand sanitizer and disinfectant wipes is crucial when traveling with a medically fragile passenger. If your child will wear a mask, there are tons of N95 options on Amazon if you'd like that added layer of protection. For babies and young toddlers, babywearing is so helpful for going through security- and it also keeps their curious hands away from the germ-laden surfaces of the airport. After making it through security we try our best to wait for boarding in the least populated area of the terminal. Sometimes crowds are unavoidable, but there are typically some less condensed areas that you can sneak off to, to protect your little one. To minimize exposure, wipe down seats and avoid touchpoints as much as possible. I highly recommend asking for pre-boarding, explaining that due to your child's medical condition, your family must have extra time to sanitize the row and adequately store your medical equipment. We have never been denied preboarding when we have asked! This prevents you from having to stand in line or face the added pressure from large groups of passengers boarding with you as you get settled.

Some important things to remember: have all the medications in the front pocket of your travel bag that your child will need during the flight, in addition to applesauce and high-fat snacks. Packing a couple of clean tablespoons for mixing medication is helpful, but most planes will have spoons and plastic cups-should you forget. When flying with kids, you can never have too much water or snacks! Bring things that your child likes to eat, even if they are special treats. Healthier snacks we enjoy on the go are Lara Bars, soft-baked organic breakfast cookies, peanut butter and fruit, fruit leather, and whole milk. However, don't be afraid to pull out all the stops. Chocolate is high in fat and an awesome modulator pairing in a pinch! Screen time, sticker books, new toys to unwrap, and coloring books are excellent entertainment options. Don't forget to feed yourself, too!

On our last vacation, my son developed a fever and seemed to be brewing a cough. At the time, he was on daily Pulmozyme, and we would add in hypertonic saline during illness. I had underestimated the likelihood of him getting sick on vacation and forgot to pack hypertonic saline just in case. We quickly messaged our CF Clinic and had saline sent to the nearest pharmacy with no issues. We picked it up without a hitch and added it to our treatment routine. Even IF something is forgotten, do not panic. Your team is here to help you navigate any blips in the road; during weekdays they are a message away. On weekends and holidays, your on-call pulmonologist can help you troubleshoot any CF-related health concerns your child encounters! Most importantly, try not to stress. Life happens, and no matter what, you will come out on the other side. Traveling with my child diagnosed with Cystic Fibrosis has given our family unforgettable memories we will cherish forever. Taking the time to prepare, pack, and plan for the unexpected will leave you feeling confident in your travel endeavors. YOU’VE GOT THIS!

Link to TSA Cares Application