Medically Complex Travel: The Good, The Bad, The Ugly

We did it, friends! All 5 of us packed our bags, got on a plane and spent 10 glorious days on a family vacation. We went to the beach and then to Disney World and had a great time, despite my worry. So let’s break it down. How did we do? How did we manage? What did we learn?

Meds make travel complex

It really wasn’t so complicated after all. Well, once I realized that relying on my cognitively delayed daughter with memory lapses may or may not be able to count out ALL of her own meds properly and wound up racing down to the hospital pharmacy to intercept the refill at the last minute before they threw it in the mail and we couldn’t get them in time.

Yep, we learned a bit of a lesson there. We just need to double and triple check we have really counted ALL meds out before we leave….not just the day before!

Then we traveled in the morning and had a plane change in Houston. Sounds good right? Phoenix to Houston is less than 3 hours on a plane. Great. But wait, what about meds and the time change? Well, I quickly realized I could just set 12 hour timers on my phone for travel days and that definitely helped. We did meds at the airport on our way to the next plane and I just reset the 12 hour alarm. Medical mom win!

Lastly, we had the question of med times. 3 hours is just enough of a time difference that it would put one med squarely in the middle of the night while we were at the beach (not a huge deal) and Disney (slightly bigger deal due to exhaustion on all fronts) so we slowly switched the times and got them to their regular schedules for the trip and then moved it back.

When we travel I take charge of the meds entirely. I wake them and hand them meds and water. I remind them when we are walking on the beach or sitting down for a meal. I take charge and that’s OK. It’s OK to say that they need the extra help. It relieves the pressure from them and the worry for me.

Tigger with three teenaged children smiling and posing for the camers

Nothing to report

Now, if you were around last summer you may recall that we had a pretty big seizure in Florida in the middle of nowhere with no real medical professionals around to help. We called the on-call back home and explained and they advised us over the phone and we sent her back into the tube when we got home to be sure she was OK and not having a bleed. She wasn’t and all turned out fine.

That being said, I would be lying if I said I didn’t worry about a repeat occurrence this trip. I worried that the nearest hospital isn’t even close to equipped to manage my girls and their disorder. That I would have to be on super-advocate alert.

I looked at the nearest Children’s Hospital to Disney and saved the directions in my phone, thought that was our second stop. I informed both teams we would be in Florida did everything I could to prepare for the worst.

It didn’t happen. The worst, or any variation of the worst never came. We made it through the 5 day beach stop at my Aunties beach house and had a blast. The girls and I rode horses on the beach at sunrise, all 3 kids rode jet skis with my husband, we went and got ice cream at our favorite little spot in town and has the oysters at The Shipwreck (a MUST if you visit St. Joe Beach, Fl) and took in a bunch of sun and salt water. It was great. No events, no catastrophes!

We even made it through Disney with no incidents. We used the DAS pass to cut down on line waiting since heat has always been a trigger for the girls and boy was that the best piece of advice I have ever gotten about parenting and travel!

We stayed at a Disney resort which in my opinion is the only way to do it. Free parking, free shuttle service to all the parks, early entry to the parks. It was a great experience, overall. And again, no incidents at all. I never did have to return to Maps to pull out the directions to the hospital. We’re calling this trip a win!

two girls and a boy sitting in a teacup at an amusement park smiling

Best travel tips

Traveling with medically complex kids can be stressful. The unknown is NOT our friend and we live much of our lives in this space as it is. How did we minimize this unknown and the effects of it?

  • Prep early
  • Map hospitals from hotels, parks, etc
  • Count meds out for the whole trip plus 2 days just in case
  • Carry copies of most recent scans, results as needed
  • Never put meds in checked luggage
  • Use timers, not alarms for meds during travel through time zones
  • Look into things like the DAS (Disability Accessibility Service pass) to avoid crowds, lines, triggers
  • Give yourself (and your child) grace. If you miss a med dose or mess up on a feed don’t beat yourself up. It happens and even more commonly during travel.
  • When in doubt call your team. Your provider likely has an after hours service. Use them if you have any doubts or questions. They are happy to help!!

I must say, I am feeling slightly more confident about traveling with these girls now that we have done without any major medical concerns. Who knows, maybe we will venture even further one day!