As my son reaches three and a half, it’s safe to say he’s quite well traveled. He’s had probably 10 ambulance rides, and just as many road trips and plane rides. Now, the ambulance rides were not by choice — albeit necessary, but the other voyages were all in the name of visiting family and other personal life choices. No matter why you travel with your medically complex kiddo, you’ve got to bring a lot of baggage. You can never assume every thing will go smoothly, you can never assume you will always be with electricity, and you can never assume you can simply purchase your medical supplies or formula at the nearest Target or Walgreens. Here’s what I would recommend to bring on your travels, in no particular order, based off of our own experiences.
Medical History Summary
- Even if you have electronic records, you can’t always rely on wifi, internet service, cell service, etc.
- Type out a sheet of your child’s medical history, including diagnoses, surgeries and dates, current medications, insurance information, and all of your doctors’ and specialists’ names and phone numbers.
- Include wether your child is non verbal, autistic, or has limited mobility, what your child likes / dislikes, and how your child is soothed.
- Include emergency contact information — people who are not traveling with you, of course.
- Medically complex kiddos tend to decline very quickly with their ailments. Have tylenol, steroids, inhalers, epi-pens, and extra feeding tube buttons with you at all times.
Call TSA Cares
- There are luggage tags for Medical Equipment you can find online. I have one on my diaper bag and feeding tube backpack at all times. These DO NOT COUNT AS CARRYONS — so rest assured you won’t have to check them.
- A few days before your flight, call TSA Cares at (855) 787-2227. It is a toll free helpline to assist travelers with disabilities (and/or caregivers). The last few times I flew with my son, they were able to lead me through security — skipping the line, and they helped me carry our things all the way up to the gate. From there, other designated helpers with the airline were able to assist me. If your child is in a wheelchair, you should have priority boarding, so you can get on first and get settled before they allow any other passengers to board.
- Always bring more formula than you think you’ll need. I’ve checked my son’s formula when flying. It’s considered medical supplies and not readily available to buy at the store. If your child is on medicaid, the medical supply company may not be able to deliver your supplies to another state under Medicaid coverage, so it’s best to check the formula you already have OR have it shipped to where you are going. Checking it can be free depending on how much luggage you have and which airline you are flying.
- Last time I flew with my son, I brought enough extra formula for a day. Well, a couple of the cans leaked and were unusable, then our flight was cancelled and by the time we got to the airport, we were continuously delayed due to bad weather. I was completely out of formula by then, and was scrambling for plan B in my head — protein shakes and milk were available at the airport store, but I didn’t see baby formula anywhere.
These are the most important things on my list. Other tips I would include would be to have diapers and wipes sent to the hotel where you are staying so you won’t have to carry them with you, find other medical moms (or dads!) in the area who know what resources are available in the event you should need them, know where the nearest hospitals are, and be flexible. Remember that you simply can't control everything, but you can be prepared for different scenarios. Know that good, kind people do exist, and if you need help, ask around. Half of the times I’ve traveled with my son, I did so by myself. This once shy girl, is now a full blown momma bear — recruiting other passengers for help because it takes a village. I’ve been pleasantly surprised with the kindness and eagerness to help I’m met with from complete strangers.
Traveling with medically complex children can take some effort as far as planning, but it’s worth it for everyone — our kids need vacations and changes of scenery, too.
I hope this helps any of you out there in planning for a family trip — whether it’s for fun, or for visiting doctors in other areas, or any other reason. If you have some tips for traveling with medically complex kiddos, please leave them in the comments section of this post on social media!