Traveling with a child who has complex medical needs can be daunting, to say the least. There is so much preparation involved, that sometimes it almost doesn’t seem worth it. Or if we do travel, I often feel that I need a vacation when I return home!
The easiest thing for me has been to keep a checklist that I can print out each time we are going to travel. I certainly spend the most amount of time packing and planning for my daughter—the rest of us are easy—but for her I start planning sometimes a week in advance.
I wanted to share a sample of my checklist in hopes that it may give other parents a starting point to make sure they are fully prepared to travel.
- Is there a children’s hospital nearby or a local hospital that will transfer to one?
- Is there a pharmacy nearby that can provide needed medications?
- What is the weather like there? Will it be too hot for my child and do we need to make sure there is a place with air conditioning that we can go to?
- If traveling for medical reasons, I try to find something fun to do to make it a bit more exciting for the kids, such as a zoo or children’s museum. Check with the hospital you are going to since sometimes they have discount tickets available.
- Is there a fridge for formula/fluids/medications?
- Will there be extra room to fit stroller and medical supplies (or a handicap room)?
- Are there plenty of outlets for pumps?
- What documents do I need to get through security, such as a medical card for implanted devices?
- Have I obtained a doctor’s note for any formulas and medications that must be carried onto the plane?
- Have I contacted the airline about checking medical supplies? Any suitcase that is being used for medical supplies should be free to check.
- How will I transport my child? If your child is in a stroller, you can wheel them up to the gate and check the stroller for free.
- How will we board? Many airlines will also allow a child with a disability to board first so that you have a bit more time to settle in.
- You may also want to add to your list some of the important things you need to bring in case of emergencies. Here are some examples:
- Cooler for IV fluids/formula/medications
- Plug converter for pumps
- Mat or changing pad to do diaper changes
- Extra outfits, since we almost always have a diaper leak or tube leak
- Extra medications, plus original bottles and current prescriptions
- Extra IV fluids/formula
- Extra pumps/batteries
- Extra supplies (especially if your child has a central line…bring lots of syringes, gloves, masks, dressing change kits, flushes, alcohol wipes, etc.)
- Essential notes from care providers (ER protocol letter, latest discharge notes, explanation of condition)
- List of doctors and phone numbers where they can be reached
Another thing to keep in mind is that many infusion and supply companies will ship supplies to your destination. Daily supplies can really add up, and if you are traveling for multiple days, this can be very helpful. Check with your company to find out their policy. Always pack what you need for the day you are traveling plus extra in case the supplies don’t arrive on time or there is a problem with delivery.
If you have a Medicaid waiver or participate in another Medicaid program, check with your case coordinator. Sometimes Medicaid will provide reimbursement for out of state medical related travel. This can cover mileage, rental car, flights, hotel, and even food.
Don’t forget to take care of you! I inevitably forget to pack something important for myself, like my own medications. In the stress of packing for your child with medical issues, remember that you also need to take care of yourself while away. Will you be staying with friends or family? Bring a book or something relaxing and try to make some time for yourself to refresh and recharge.