by Jamie Barnes
It seems daunting—the idea of travel with a child who is medically complex. It can be an amazing opportunity for the whole family if your child can handle it! There is a lot of planning but it doesn’t all have to be last minute. Part of the planning process is just thinking things through. I had a notepad and pen on my nightstand to jot down the thoughts, ideas and to-do’s as I came up with them while drifting off to sleep. The other part of planning is working with medical providers on emergency plans, which may include ordering additional supplies/pieces of equipment not normally used.
A little background on the complexities we are dealing with: my son Hayden is six years old, is a fraternal quadruplet, and has an undiagnosed syndrome with the major symptom of cerebral atrophy. Hayden deals with multiple GI issues, including intestinal pseudo-obstruction and Morgagni hernia. He also frequently gets respiratory infections with monthly pneumonias. Hayden has pages of diagnoses, but to sum it up he has multiple and severe disabilities, uses a wheelchair and needs full support. Hayden has a G-tube for decompression and draining as well as a central line for nutrition and medications.
Getting Information and Getting There
As a family, we take a couple of trips per year. Sometimes we fly and other times we drive. When we plan trips, we always make sure the destination is relatively close to a hospital, specifically one that has a pediatric practice. We also research the sleeping situation. As a bigger family, we can’t really all squeeze into one room at a hotel, but the reality is that all that medical and mobility equipment can fill up a room as it is. We find it more cost effective to stay at a vacation home rental found on sites such as Vacation Rentals by Owner or HomeAway. It’s easy to search for accessibility and many other options on these sites. Communicating your child’s needs to the owners can yield some invaluable information and resources, and at times has netted us a discount.
If a hotel is the choice, sites such as SixSuitcaseTravel have helped us find two room suites with a kitchenette for keeping the medications and TPN refrigerated. We do stay in hotels for an overnight when taking a road trip to our destination.
It works for us to break the travel up over two days so as only to drive five to seven hours in one day. We have two minivans, one with wheelchair accessibility, and the other with his special needs carseat in it. We take both vans and typically Nana and Papa accompany us on the driving trips and drive one. It works well for our kids to stop every couple of hours and rotate seating in vans, including Hayden. During our stops for food and potty breaks/diaper changes, we also perform a stretch routine with Hayden.
Supplies and Equipment
Our infusion pharmacy has been really wonderful to work with. They have no problems arranging for all the supplies, medications, TPN and lipids to be delivered via UPS air overnight to the destination. We don’t see any additional charges when going through the paperwork. The two large 40 lb boxes of TPN and supplies are packed in insulated containers with iced gel packs. Not only do I call ahead, but the pharmacist also does to ensure that the boxes of medical supplies could be accepted at the destination at least one day prior to our arrival and be stored in refrigeration.
What we learned after a recent trip was to ask where or in which refrigerator within the hotel it will be stored. We had our freak-out time when the hotel clerk couldn’t find the boxes of supplies for two hours. Frantically we made calls and tried to come up with a plan to have a new order sent out, but UPS doesn’t overnight on Sundays, so the pharmacy was seeing if it could be flown on a commercial airline. Then two hours later the hotel clerk found the boxes in a refrigeration unit detached from the main building.
We carry on the plane and/or drive with at least two days worth of stuff, which is still a lot. Aside from nutrition related supplies, we also order and pack a Broviac catheter repair kit in the appropriate size for his central line, as well as an additional G/GJ tube kit, just in case the hospital doesn’t have the right sizes of these items if an accident occurred.
If you are flying and your kid needs oxygen, it can be quite challenging to arrange. I recommend fully reading the disability section on the airline’s site and their policy on use of airline approved portable oxygen concentrators. The last time we flew, I obtained a list of providers and contacts for weekly rentals of oxygen, and I compared prices and types for Hayden’s need (average price $200/week). Then I asked our DME what their pricing was and if it was possible to bill insurance. To our delight, Hayden’s DME provided complimentary portable concentrators to established home oxygen concentrator consumers.
With all of Hayden’s equipment, it is optimal for him to have his own bed. We bring bed rails. Actually sometimes the foldaway beds work best since we can shove pillows and wedges under the mattress to elevate it. If staying at a vacation home in a touristy destination, it can be quite easy to rent a hospital bed, crib and other things without spending too much. Research these options for the destination and allow at least two weeks for reserving these items. Most include delivery and set up.
Airports and Flying
If you care to imagine six-year-old quadruplets and parents making our way through the airport, it probably looks like organized chaos. Since Hayden is unable to sit up independently, we have seating issues. He has a wheelchair that tilts and reclines, but it is a non-folding/collapsing wheelchair, which presents travel challenges. The accessible minivan we have now required an add-on “jump seat” so that my three typical children could safely ride in their full back booster car seats, but that isn’t an option for renting an accessible van. That coupled with the costs of renting an accessible van at our destination made us think more creatively.
In addition, his special needs carseat is too big for an airline seat. We considered the CARES harness system, but since he is a hyper-extender that wasn’t going to work either, as he’d slide down without a pommel or hip abductor holding him up and be left hanging. The solutions included borrowing a toddler (convertible) carseat from a neighbor and purchasing a used Go Go Kidz Travelmate. It is a frame to attach the carseat to that makes it mobile.
We also use his special needs stroller, a Maclaren, which folds up umbrella style. Every walking member of the family has a wheelie bag of some sort. If flying, we try to pack as light as we can. Our checked baggage is limited to luggage for clothing/shoes. We can fit it to a minimum by putting each child’s set of clothes for each day together in gallon zip-lock baggies. We have each person assigned to a carry-on bag, which is mostly Hayden’s stuff. This includes portable suction machine, TPN and lipids pump bag with two day’s worth supplies, portable oxygen concentrator just in case he needs it, pulse oximeter, nebulizer, and vest airway clearance machine. Additionally, we have a diaper bag, which holds the obvious, but also includes his medical folder, his seizure rescue medication and replacement parts/pieces to equipment devices.
Once we get to the airport, we find it works best to have my husband drop Hayden and me off at the terminal and get in line while he takes the other three to long term parking and shuttles back with all the luggage. Curbside check-in is well worth tipping a skycap.
We have always been pulled aside to the line for family and disability screening by the TSA. So far it has always been a smooth process. Hayden’s equipment takes time to swipe and test for explosives, but not as long as if we had to stand in the regular lines for screening. The TSA has been very respectful and asks what they need to know about him for the purpose of screening. They pat him down and explain as they do it.
Upon finding our gate, we inform the crew that we are traveling with a child with a disability plus three additional young children. As we settle into the priority boarding area, the portable oxygen concentrator is noted with the medical certification from the physician. When it’s time to board the plane, we fold up the stroller and put it in a carrying bag to prevent the grime and/or wetness that sometimes occurs when handing something off to gate check. Then we put Hayden in the five point harness carseat attached to the Go-Go Kidz Frame Travelmate and wheel him to his seat. They require he sits by a window. Still attached, the frame slides down and we buckle the carseat and Hayden in across his lap. The oxygen must be stored under the middle seat and we put his suction under the seat in front of him, along with the TPN bag. Most of the other equipment can be put in the overhead bins.
Hayden typically has no issues with flying. I worry though that he will require a diaper change in-flight. I do line the carseat with a chux. We haven’t really thought that plan through all the way. It’s hard enough to do public bathroom changes, as he is too big for the baby changers. If it is absolutely necessary, we’d have to lay a couple of chux on the floor. Upon deplaning, most passengers are kind and helpful offering assistance to get all the equipment off. Then we each get our assigned stuff, wait to get the stroller and quickly make our way to the luggage carousel.
So that’s our adventures—or at least how we get there! Of course, there’s much more to think about once you get there. For example, when it comes to getting Hayden onto the beach, many beach clubs offer beach wheelchairs as a courtesy, but they usually lack straps/belts and don’t recline. This summer we will use an all terrain canvas (folding) wagon with canopy and put his feeder seat in it. Another tip is that many theme/entertainment type of venues have a disability rate, which is not often posted, and is often half price for the individual with disabilities and half price for their caregiver or nurse.
While getting there can be a struggle, it is worth it in the end!