7 Ways to a Successful Road Trip with a Medically-Fragile Child

August 13, 2018

My son is the inspiration behind our switch from air travel to road trips. At first I dreaded the idea of spending 18 plus hours trapped in the car with my kids. But now we’ve found our jam, and I actually look forward to our road trips. We have lots of memories singing songs, “car dancing,” listening to audiobooks, having heartfelt conversations and cheering as we cross each state line.

Any type of travel with kids is hard. Kids with special needs–especially medically fragile children–bring some unique challenges. My son is tube fed, needs to be catheterized every three hours, and takes a boatload of medications, some of which require refrigeration. Even though we have flown with him, we prefer to drive. His enteral feeding formula is a pain to check through an airport and inevitably results in my husband getting a very personal pat down. It’s expensive to ship formula, and we can’t do without a bunch of medical equipment at the ready anyway. Road tripping makes travel easier for us.

Here are some things we’ve learned about how to have a successful road trip with a medically-complex child:

1) Map out your route.

Sure you have GPS, but pay attention to the cities you will go through. Before a road trip we map out our route according to the hospitals in the major cities along the way. We don’t always go the fastest route, but more the medical route. When we drove to Chicago for Thanksgiving, we purposely booked hotels in cities with Children’s hospitals — Memphis on the way there and Little Rock on the way home. We did have a road trip emergency on one of our trips to the beach and needed a children’s hospital. So yeah, we’re a little bit skittish about being prepared with a hospital en route.

2) Drive when it’s dark.

We’ve found it’s best to drive early in the morning. We try to get on the road by 4:00 a.m. Our family rule is no talking until 6:00 am. The driver can of course choose music to keep him/her awake. Some friends have told me they only drive at night. The hope, of course, is that your kids will sleep. Bring along weighted blankets, compression clothes, and favorite stuffed animals. Regardless of whether your children actually sleep, the benefit of driving while it’s dark is that there is less traffic and you make better time.

3) Stay hydrated.

The first time we went on a road trip we purchased drinks at gas stations along the way. We wanted them cold. The problem is we frequently felt thirsty, and when we did stop, were tempted to go for the soda rather than water. By packing water bottles in a cooler bag, we have more than enough water to keep us hydrated. This is especially important for my medically-fragile son with kidney issues who needs a lot of water throughout the day. Bringing your own water is way less expensive than buying water at a gas station. And honestly I think hydration helps keep down the cranky factor.

4) Pack snacks…duh!

What more do I say here? Pack favorites. Favorites for your kids and favorites for you. Keep them healthy, but it’s okay to throw in some special treats that your kids don’t usually have. It all adds to the hype of the trip. That said, skip the red dye especially if you have kids with ADHD.

5) Prepare a bin of favorite toys.

For our first road trip, I packed a toy bag, but it quickly got stepped on and squashed during rest stops. Now, I place a couple of sturdy toy bins in between the kids’ seats and the front seats. As soon as my son loses interest in one toy, I can easily grab a new one and toss it back. I discovered that a travel tray with edges will strap around a car seat and help keep things within reach. (It also keeps my son from pulling out the tubing of his feeding tube.) If your kids like noisy toys like mine, you may want to consider purchasing noise canceling headphones or earplugs for when you just can’t take it any longer.

6) Bring medical files.

Whether it’s paper copies, or electronic files that you can access on your phone, these are essential. Just in case my son ends up in the ER or a hospital on a road trip, we have everything we need to explain his condition. This is easier than trying to keep a full medical history in your head. I especially love this Medical History Template provided by Casey’s Circle.

7) Take medical supplies whether you expect to need them or not.

Pack some essential medical supplies in a small overnight bag. In our case, we must have a back-up G-button in case it comes out. A small bag makes it easy to grab-and-go when we spend the night in a hotel, or heaven forbid, a hospital.

Finally, don’t forget to give everyone a chance to get out and play…somehow.

road trip medically-fragile child, travel tips with a medically-fragile childEveryone needs a break from the car. This is especially challenging for kids who aren’t walking, but still need get out of their car seat. We cannot let our son out at a rest stop and crawl around. Instead we stroll him around the rest area for some fresh air. Even if it is only for a few minutes while we fuel up, it helps.

Road trips are about being adventurous. And flexible, when the adventure doesn’t go the way you planned. Being prepared will make all the difference. Whatever happens, your whole family will share a memorable summer trip.

What are your road trip tips for medically-fragile kids? What have you found to be the best way to pass the time and the miles?