Travel Tips
From ShortGut - Wiki
(with thanks to Don Freeman of Oley Canada]
Contents |
In advance
- Destination hospital: Make sure your doctors are comfortable with the medical resources available at your destination. See if they can give the relevant hospital a heads-up about your child's visit. You can also join IAMAT (International Association for Medical Assistance to Travellers), which provides a book listing doctors and medical facilities around the world that provide care in English and have met US/Canadian medical certification standards.
- Medical records: Get a printout of your child's medications (from the pharmacist) and a letter describing your child's medical history and condition (from the doctor). You may want to request that the doctor's letter state that your child's medical supplies must be either carried on or "valet" checked at the end of the ramp, to prevent supplies from getting lost when checked. Make copies of these printouts, and show them if you have any problems getting through airline security or customs.
- You may want to speak with your home care supply/TPN provider and see if they can ship your supplies to your destination. You would still want to bring 1 extra days supplies with you in case of an unexpected delay.
- Practice smaller trips. Any kind of smaller trip (road trip, overnight trip) can help to increase comfort levels with packing, double-checking everything, doing sterile cares in new places, etc.
- Accommodations: An apartment with a big refrigerator makes traveling on TPN much easier. Sources include :
- When you reserve a hotel room, let them know that you need a frig. for medical purposes and you won't have to pay extra for the frig or a higher end room that comes with a bar. Also, ask them to have the frig turned on ahead of time so it is already cold when you arrive.
- Airlines medical desks: You can apparently set up a permanent medical file with airlines, which allows you to carry extra luggage, have a staff member assist you through security, board in advance, notify the crew in case you need any special service onboard, have a staff member waiting to assist you in claiming your bags and finding a taxi/shuttle at your destination. They will want a letter from your doctor specifying medical needs and supplies. You then inform the airline that you have a medical file when you make reservations and check in. If anyone has gone this route and has additional information, please add it.
- Again, a personal decision, but we found carrying a picture of AustinRath with his shirt off (central line, g-tube and ostomy in plain sight) highly effective when people give you a hard time and question the severity of your child's medical illness. Whether it be a hotel that doesn't want to give you a room with a frig. or an airline agent who questions your need to go through special needs security, a picture speaks a thousand words...
- Broviac repair: You may want to learn the emergency procedure for repairing a broken broviac, and prepare a supply kit. This may be unique to MaxMunakata, but his broviac has broken frequently enough, and the repair procedure is straightforward enough, that it gave us great peace of mind to have it under our control. Your home medical supply provider can supply one. You may have to pay out of pocket. They cost about $75. Make you sure have any additional supplies to do the repair such as sterile gloves, mask, alcohol, scissors, etc.
- If you can arrange for someone to travel with you, this can make a world of difference, even in just helping with the suitcases of meds and supplies. We were lucky enough with MaxMunakata to travel with someone who loves him as much as he loves her, travels abroad frequently, and is a Nurse Practitioner to boot! This gave us huge peace of mind, let us attend a 3-day conference, and gave us a date night in Paris.
Packing tips
- Bring several extra days of supplies, in case you get stranded or anything breaks.
- Be as organized as possible in your packing. One system is to make a list of everything you need. Lay out all your supplies prior to packing them, ticking each on your list as you go. Look at everything laid out as another check. As you pack each item, strike it off the list as a final check. Check your list to make sure everything has been struck off.
- Use lots of zip-lock bags to organize things by type and/or day, so you can easily find them later and keep things organized for your trip. (We have a huge collection of large ziplocks from our home care supply company that are very handy for this.)
- Have a backup plan if you forget something, with your home health care company and/or the hospital at your destination.
- TPN and meds can be kept cold with refreezable gel packs and transported in soft-sided insulated coolers that fit into regular suitcases (e.g., IGLOO maxcold 24 can cooler at Target.com at Amazon.com). We found it worked well to use 2 of these coolers -- one with 3-days worth of supplies inside a carry-on suitcase, the other with the remaining supplies inside a gate-checked suitcase. Being able to use regular luggage makes life much easier than trying to deal with a large, hard cooler, and the soft-sided coolers keep things sufficiently cold when filled with frozen cold packs (e.g., 20hr or so for a flight to Paris).
- For car trips, TPN and meds can be kept cold in 12 Volt car coolers that plug into the car. Another useful product is a box with 2 or 3 prong outlets that plugs into the car cigarette lighter socket.
- If you must check refrigerated medical supplies, label the luggage with "Fragile" stickers and a note indicating that the supplies must be refrigerated if delayed. Indicate a date and hour 48 hours from the time you packed them.
- Electrical stuff: don't forget to bring plenty of batteries (though these are internationally standard, so you should be able to buy them wherever you go), and check the electric current in your destination World Electric Guide. Check your pump transformer (power adapter) -- if it says 120-220V 50/60Hz then it will work wherever you go -- you will just need to get a plug adapter to plug it in (typically $10 or so in a travel store). If it only says 120V/60Hz (or 220V/50Hz if you are in Europe), then you will need a voltage transformer to convert the power to the right type -- this is typically $50 or more, and you need to make sure the one you get is rated to handle the power needs of your pump (listed in watts or amps). It is also useful to bring a power strip or two -- especially useful are ones that do not have surge protection (i.e., just straight electrical connections), because these can be run through just a plug adapter (not a transformer) and power anything that doesn't need a transformer, in addition to being plugged into the transformer to power multiple things off of one transformer. Be sure to add up all the power for all the items running off of one transformer!
- Useful items to pack
- A small hook to fit over a door top -- can be used to hang your solutions and prime tubing
- A small plastic bottle to store used needles until you return home to your Sharps container
- A metal cookie tray to swab with alcohol as your sterile work surface
- Sit-n-Stroll car seat/stroller: No need to bring both a stroller and car seat. Airplane approved, perfect for rental cars and can be used as a booster seat too.
En route
- At the airport, go to the special security line (for wheelchairs etc.), and explain that your child is connected to pumps for IV nutrition and you have a doctor's letter. It is easier to get through special security if your child is hooked up. Typically only one parent is allowed to accompany the special needs child through the special needs security, so anyone else traveling will have to go through regular security. Not all airports have a special needs security line.
- Take both regular suitcases of TPN supplies with you to the gate. Carry one on, gate-check the other. You may need to specify that you want to "valet" check the baggage at the gate, which means at the end of your flight, it will be brought back up to the end of the ramp. If you just ask for it to be gate checked, at your destination, they will typically still have your luggage go through the general luggage carousel.
- This decision will depend on many factors, but when MaxMunakata was on TPN 18-20 hr/day, we found it easiest to travel with him hooked up to his TPN the entire time. That way, we didn't have to stress over flight delays, or connecting/disconnecting en route. For international travel, we would begin a new TPN bag at the last possible minute, just before leaving for the airport. We did not run his Omegaven en route, to avoid issues with the bottles having to be upright all the time -- skipping one day was better than worrying about air in line all the time.
- You may want to bring antibacterial wipes with you to wipe down the plane tray, arm rests and windows.
- If your child will be infusing while traveling, avoid bulk head seats. All "bags" including TPN and g-tube backpacks must to stored in the overhead compartment and they will make you move from those seats.
At your destination
- When traveling, AustinRath's family drains ostomy contents into breast milk zip-lock bags by The First Years (sold at Target). They have a wide spout to get the bag into it, zips securely to prevent leaks and is the cheapest of the products. We then measure output volume when it's convenient. Another option is to use the small zip-locks that meds come in.
- To get good coverage of the public changing tables, we also bought a vinyl table cloth at Wal-mart and cut it to size (about 3x4 feet). It's more compact than a thicker changing pad and it's easy to wipe down and sanitize.
- Note that refrigerators in Europe tend to be small. If yours doesn't have room to refreeze your gel packs, a nearby restaurant or bar may be able to help you. Explain your urgent need, place the gel packs in a labeled bag, and they may store it in their freezer for you.
Other helpful travel info
- FAA - Passengers with Disabilities link [1]
- Travisa website [2]
- On board Medical Assistance[3]
Free Flights for Medical Care
There are a variety of programs that will provide free flights to transport medically ill children, including children with short gut, to medical facilities. Flights are typically on small private planes or in some cases corporate jets. You can have routine flights (once a month to clinic) or emergency (to the hospital for transplant). Requirements vary from program to program. But most will require that your treating physican write a letter confirming that you child requires the service.
- Miracle Flights 1-800-fly-1711 [[4]] - national service
- Angel Flights [[5]]
- Delta Airlines SkyWish Program - This program uses donated frequent flyer miles to help children and adults with life-threatening illnesses and injuries travel to get the help they need. Telephone: (703) 519-0092 Fax: (703) 519-0097
- Northwest Airlines KidCares - Northwest Airlines uses donated frequent flyer miles to provide free air travel to children age 18 and younger who must travel to receive medical treatment. Telephone: (612) 726-4206
- Multiple programs listed here [[6]]
- More multiple programs listed here [[7]]
- "Getting Money and Flights to Travel to Doctor's Appointments" [[8]]
