Travelling with a Medically Complex Kiddo: Preparation

A few weeks ago, our family packed up and flew across the country.  I never thought I would fly with June with her current medical conditions (before her first tracheal reconstruction) and definitely not during RSV season.  But it was very important to us to join our family to celebrate the life of a loved one who passed away recently.  So after some research and a lot of preparation, off we went on our big adventure.  We returned safe, sound and with great memories.  I’d like to share some tips we learned which may be helpful for other families with medical needs to consider when planning a trip.  Then in a later post, I will share packing tips and that printable that I have hopes of producing.

Travelling With a Medically Complex Kiddo

1. Seek your doctor’s advice first

Your doctor will explain how your family members’ health may be impacted by common risks of travel such as long periods of physical inactivity, changes in air pressure and air quality, lack of access to emergency medical intervention and prolonged exposure to the public. Remember to review the health of everyone travelling, not just the medically complex person; Rowan needed a quick peek for a possible ear infection, Greg was kicking a cold and I checked in with my OB before flying, too.  You should also discuss what medical facilities and supplies will be available to you at your destination, if you should need them. Note that some people need a doctor’s note to travel or to access local resources (more below), so be sure to bring necessary forms to your appointment.  And realize that your doctor may even recommend that you NOT travel if the risks are significant.

2. Understand the disability policies and procedures of your airline, bus, train etc. 

Seek information from the airline/bus etc website on what services are available to people needing accommodation for a medical condition or disability, such as preferential seating, guest escort, extra space, or separate boarding.  Also check if your medical equipment is approved for use; June’s emergency oxygen tanks are not allowed on airplanes so our DME company lent us an FAA approved portable oxygen concentrator (POC) for our trip. Our doctor needed to write a prescription for the POC as well as sign the airline’s POC form, so be sure to give yourself plenty of time for this legwork.  Lastly, think about whether there will be room around a standard seat for all of the medical equipment and supplies that you need to access during the trip.  If not, you will need to speak to the airline about how this need can be handled.  June doesn’t use a ventilator thankfully, but I did wonder how I would have managed to fit a vent in addition to the suction machine, emergency bag and oxygen concentrator that were already shoved under the seats in front of us- and I had the benefit of using Rowan’s foot room in addition to mine/June’s (she flew as a lap baby).

3. Contact disability services for your airline/bus/etc

In addition to reading the policies, get in touch with customer service to alert them to your medical needs.  There is actually a lot that can- and needs- to be done that you can’t do from the website.  In our case, disability services first needed to approve her as a passenger on our specific flights given her medical needs.  Then the make and model of June’s medical equipment needed to be entered into her passenger information along with a note stating whether the equipment could be used during taking off and landing in addition to during regular flight.  The doctor was able to designate whether I could use the POC during take off and landing on the POC form.  For the suction machine, the disabilities services staff looked up the make and model in their existing list of medical equipment, and it was listed as approved for take off and landing as well.  (Thankfully, no fight needed there.)

4. Contact your DME company 

Let your DME company know about the travel.  You may need to rent special equipment that is approved for travel.  Since we have a POC at home already (but it’s not FAA approved), the short-term rental was free for us.  You’ll want to adjust any delivery times that are impacted by your travel, as well as get any extra supplies you’ll need on the trip.  Also, ask if the DME company has an office or an affiliate in your destination area in case you have an unexpected need.

5. Contact your nursing company

If you have home nursing, let the company know that you’ll be travelling so they can cancel any affected shifts.  We don’t use nursing anymore, but I know other special needs families who brought up to three of their nurses on vacations with them!  Check with your nursing company policy, because some do not allow their nurses to travel with patients, start/end shifts outside the home, or provide medical care out of state.  And you will have to work out the details of the nurses’ travel costs- will any be covered by your insurance? Are you offering to pay out of pocket or split the cost with the nurse (if she’s opting to accompany on those conditions)?  Will the nurse(s) bunk with your family? Eat with you? Will that only be during their shifts or during their off time too?

6. Contact your hotel/hosts etc

Communicate your specific medical needs to any hotels or homes you’ll be staying in, such as ramp accessibility, protection from second hand smoke or allergens, specific sleeping arrangements and adequate access to electrical outlets.  Also check if they might have items on hand that you don’t need to pack, like a pack n’ play, baby monitor or humidifier.

7. Locate medical services at your destination

We felt comfortable about the medical services available at our destination because we were right outside a large city.   If I had been traveling somewhere more remote or unfamiliar though, I would have been on the phone with the local emergency responders to explain our medical needs and understand what the steps and timeline would be if we called for emergency help.  As always, keep updated medical records in the emergency bag, including a concise summary, to use in this situation.  More on that in the upcoming post about packing for the trip!


4 thoughts on “Travelling with a Medically Complex Kiddo: Preparation

  1. That was really cool that you made the whole trip work so well!!! I’m sure this article will be really helpful to others too!


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