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  • Kate Nelson

9 Road Trip Planning Tips for the Medically Fragile Family

Travel planning is exciting and fun and…….stressful! Whether you’re traveling near or far, figuring out where to stay, what to do, and all the “what ifs” that go through your mind can be overwhelming – been there, done that and yet we still continue to plan extremely ambitious trips with visions of everything going perfectly! And, for the most part it does, however sometimes a few kinks are thrown in there and it is important to stay flexible and adapt to what life throws your way (ok, those who know me are probably chuckling because they know that is VERY hard for me to do sometimes!).


With that said, I’d like to share some of the tools we use while planning trips:


1. Plan Your Destination and Route


Where do you want to go? The beach, mountains, national parks, NYC, Maine? If you’re like us, we like to explore National Parks (we will have a post on national park accessibility later) and adventure in the great outdoors. This can sometimes mean steep and winding roads with beautiful scenery! Next, ask yourself: How many hours or miles of driving is realistic for your family? This question is really important, especially driving an RV. Some people are comfortable driving 12 hours a day, however when we are in our RV, we like to cap our driving to around 6-7 hours per day, on a long travel day.

  • Plan the route –if you’re traveling by RV, you will want an “RV friendly route” and

adjust for time as it will take longer in your RV than your mini-van.

  • We suggest RV Life Trip Wizard (https://tripwizard.rvlife.com/). RV Trip Wizard is a great planning tool to help plan your route, keep track of expenses and mileage, find RV Parks along your route, and offers reviews of RV parks. We have used this application several times when we plan a week to month long trips – we love it!



2. Booking Campsites


When possible, book campsites well in advance. If you’re traveling to state or national parks book as far out as you can as these campgrounds fill up months, even a year in advance, so reservations are crucial. If you are traveling to a national park, and want to stay inside the park, check the park's website for accommodation release dates and set your calendar. Many of the parks use recreation.gov to book their sites, so take note and have your reservation in the queue ready to go when the site goes live.



3. Find Cool Stops Along the Way


Everyone knows it is hard being stuck in a vehicle all day. So, why not plan some stops along the way to stretch your legs and rejuvenate your spirit? Breaking up legs of the trip with a cool picnic spot, that tourist spot that everyone must do in their life, or tasting the local cuisine of a teeny tiny map dot town will keep things interesting and spontaneous!

  • Get the Roadtrippers App (https://roadtrippers.com/) – This app can provide fun and interesting things to do along your route. The first time we used Roadtrippers, we were traveling to Zion and the kids were SO bored as we drove through Arizona. I searched the “things to do” icon and Sunset Crater Volcano National Monument came up – right along our route – we had a nice stop and a beautiful surprise. (If you’re ever in the area be sure to take the time to visit!)

  • Useful Tip: If you are traveling by RV, research the RV parking for your pit stops in advance to save some stress and to best navigate the situation. For example, the Corn Palace and Wall Drug offer lots specifically for RVs and travel trailers.


4. Create a Packing List


Creating a packing list by category will help you stay organized and hopefully not forget anything. Suggested categories:

  • Medical and enteral supplies: extremely important to pack extra while on the road - you never know if you may have an unexpected delay.

  • Clothing: I make a packing list for each kid, may seem like overkill but when they are deciding what to bring the list really keeps them on track – especially when we will be in multiple climate zones. I should probably make a list for the hubs too, but he’s on his own in this department 😉

  • Tools: Ryan will touch on this in his RV posts, but make sure you bring the tools you think you need and the tools you don’t think you need – because you WILL need all of them! Now, tools can also be “kitchen tools” as well, and for this I like to keep it streamlined.

  • Games: Pack games your family will enjoy – one of the best parts of road trips!


5. Document Information on Your Medically Fragile Family Member:


We suggest traveling with information that explains diagnosis, medications, allergies, medical equipment, list doctors, preferred hospital, emergency contacts, etc. Just in case an accident happens (God forbid) and you are incoherent. The goal is to make sure emergency personnel have as much information as they can on your child. Make it visible and easy to find – example: In a red folder clearly marked located behind the passenger’s seat or near where your child sits.


6. Locate Hospitals Along Your Route


Emergencies are scary, super scary. Families with a medically fragile family member knows this all too well. Though it’s tough to think about, it’s better to plan ahead and have an idea for where you can get care, if the need arises. Consider having your doctor write a letter to where your child can be transferred, if necessary.


7. Elevation



If you are traveling to a higher elevation than you are used to, talk with your child’s doctor as to how it may affect your child and any advice to ease the transition. For example, if your child uses a ventilator, talk with their doctor about increased settings, hydration, etc. Consider if you may need oxygen at a higher altitude – be prepared and bring tanks and/or a n oxygen concentrator with you.

  • When we travel to higher elevations we try to do a gradual climb, stopping for a night or two in various places to ease the transition, see the sights, and acclimate our bodies, as well as stay extremely hydrated. It is best to consult with YOUR doctor on the best course of action for your family and child.


8. Traveling with a Service Dog (or pets)


Make sure to pack food and water bowls (yes, we may have forgotten this once), extra food, leashes and a copy of their vaccination record. If your pet will be staying in the RV while you are exploring, invest in a wi-fi temperature sensor so you can be alerted if the temperature inside gets too hot (example: if the A/C goes out). The one we use is the Govee Wi-Fi Thermo-Hygrometer (https://us.govee.com/collections/thermo-hydrometer/products/wi-fi-temperature-humidity-sensor)


9. Download the GyPSy Guide App


This is a wonderful audio tour guide with history and local knowledge that will not only grab your attention, but your kids attention as well! We have used this mainly for National Parks, but there are tons of “tours” available. Click here to learn more https://gypsyguide.com/




Planning your trip can be a little overwhelming, but just remember that getting there is half the fun and you never know what memorable surprises you will find on the way! Good luck and happy planning!





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