Road Tripping with a Medically Complex Kid

We drove to Chicagoland last Thanksgiving and purposely booked hotels in cities with Children’s hospitals.

We left for Pawleys Island last month and I got this email from my husband.


So yeah we’re a little bit skittish. Or should I call it prepared?

After last year’s unexpected trip to the ER on the drive home from the beach, researching in-network hospitals has now become standard road trip prep in our house. (That out-of-network bill is still not settled one year later.)

Nathan is the inspiration behind our switch to road travel. His enteral feeding formula would be a pain to check through an airport or ship to our destination, along with a bunch of medical equipment. At first I resisted the idea of road tripping and dreaded the thought of spending 18 plus hours trapped in the car with my kids. But, I actually like it. We now have lots of memories singing songs, listening to Magic Tree House audio books, and cheering as we cross each state line.

I’m not sure Nathan agrees it’s his favorite.


We have learned a few things about how to make it a successful experience, even if it’s not all bliss. Here are my list of road tripping tips for traveling with a medically complex kid.

A folder of medical files. Whether its paper copies or electronic files that you can access on your phone, these are essential. Just in case Nathan is admitted we have everything we need to explain and verify his condition. This is way easier than starting from scratch or trying to keep everything in our heads.

A bag of essential medical supplies in an overnight bag. An overnight bag makes it easy to grab-and-go when we spend the night in a hotel, or heaven forbid, a hospital.

A travel tray. I love having a travel tray with a lip that secures around his car seat. Nathan is not super coordinated so this helps keep things within his reach and prevents them from spilling onto the floor. It also keeps him from pulling out the tubing of his feeding tube.


A basket of favorite toys. We toss a new toy to him as he loses interest in what’s in his hands (or in his mouth). Lately, Nathan has an obsession for all things that spin. The rest of us were really quite tolerant of him spinning a little meal wheel for the bulk of the trip. A friend recently told me that she purchased noise canceling head phones for everyone in her family. Why do I see those in our future?

A chance to get out and play…somehow. This one is especially challenging for kids like Nathan who aren’t walking but still need a way to move around and not be confined to a car seat too long. We can hardly let him get out at a rest stop and crawl around. Instead we adapt the passenger seat of the car by putting a bunch of bags on the floor which are level with the seat. That way he can’t fall. We also let him stand on our laps and hold onto the steering wheel while brother runs out his sillies. It’s not much but it works.


A jug of water. We bring a gallon of drinking water for Nathan, but it’s for all of us really. It keeps us hydrated. It’s way less expensive than buying water bottles at a gas station and good to have in a pinch. I think to think that it keeps the cranky factor down in the car.

Traveling with the big kid is fairly easy. He is very rewards motivated. We give him clips for good behavior, prize bags after bathroom breaks, and this year Pokemon cards for doing homework sheets. Plus, a good kid movie gives us at least an hour and a half of quiet.


So this is how we survived–and even enjoyed–our trip. Fortunately this time we even avoided a hospital visit.

And like my husband said, by being prepared maybe we won’t actually have an emergency.

What are your road trip tips? For special needs kids? Typical kids? What have you found to be the best way to pass the time and the miles? 

My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!

Also be sure to check out my list of Favorite Books on Disability!

#hospital #hospitaltrip #vacation

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