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For the parents and caregivers of kids with complex medical needs, going on a summer vacation may sound like a fantasy. The amount of planning, forethought, organization, and even money it would require is daunting to say the least. While it’s important to recognize that, for some families, it genuinely may not be possible to travel, there are cases where will power and organized planning can make it work.
If you’re weighing the possibility of taking a family vacation, we believe the effort is worth the end result — lifelong memories and new experiences together. Still, we won’t sugarcoat the amount of leg work you’ll have to do upfront. What we can do is help you put together a game plan for travel.
Here are three tips for planning a summer vacation for your medically complex child:
The very first thing you should do is consult with your doctor. They can tell you whether or not they believe your child is safe to travel. If they give the go-ahead, ask whether they recommend air travel or sticking to somewhere within driving range? Do they have an opinion about the best climate/environment to be in? Do they have any advice in general?
Next, get a copy of their plan of treatment for your child (including medications, supplements, and medical history), as well as a signed statement of medical necessity (SMN). You’ll also want to travel with their contact information, including a phone number where you can reach them.
Your doctor will also be able to help you get any other documentation you might require (e.g., a doctor’s note to bring certain items on the plane).
The advice to plan ahead might elicit a well-earned “Duh.” That said, we just want to walk through some of the specific items to plan for. Once you decide on a destination, consider the availability of care there and along your route. For example, you might want to know where other children’s hospitals are in the area. Check to see if your medical supplies company has a branch location nearby.
If you’re going to travel by car, make sure you have the appropriate car seat for the journey. Consider whether you can fit all your supplies in the car or if you might need to ship ahead to your destination. Always use Google Maps or something similar to plot out a route that avoids traffic and certain terrain and includes necessary and accessible stops along the way.
If you’re traveling by plane, call the airline and/or TSA (1-855-787-222) prior to the trip. Doing so helps them anticipate your unique needs, including wheelchairs, medical supply tags, and more. Clear with them the equipment/supplies you will need to have in the plane’s cabin. If there are emergency supplies you need or restrictions they should be aware of, let them know.
Truth is, the phrase “pack light” will never apply to you. But don’t let that hold you back! Bring as much as you need and more (e.g., extra IV hydration, g-tubes, trachs, syringes, etc.). Don’t be afraid to pack heavy. If it becomes too much, consider shipping it ahead of you. The same goes for medication — Bring more than you need. Again, if there is a medical supplier in your travel location, reach out to them first and see if they have what you might need. Be sure to verify that they serve kids, too.
Before you go, really explore your goals for the trip. What do you hope comes out of it? What do you hope to avoid? Why is this important? What defines a successful trip? These are important questions to consider beforehand and again in reflection. I know that travel is a big undertaking; for some people, the time or circumstances simply aren’t right. But if you can do it, do it with planning and forethought — You won’t regret the memories you make together.
If you have pictures or advice from travels with your family, please share