Forget about traveling–sometimes just getting out of the house for an hour seems impossible! But it IS possible, even for kids with a lot of medical devices, with just a few hacks. The most important thing to know is that the more you do it, the easier it gets.
Here are a few tried and true tips for getting out of the house:
1. Make a master list. If you are trying to simply remember what you need to bring, you are likely to forget something. It is best to make a master list of everything you need when you leave home. In fact, you may want to make more than one list–one for short trips out, and one for longer day trips. If the list is unlikely to change much, you may want to laminate it. Another option is to put it in a plastic protective sleeve. In either case, you can typically use a dry erase marker to check off items as you go along.
2. Have a pre-packed Go Bag. If you want to simplify the process, keep a pre-packed bag with all of your child’s basic supplies and emergency supplies all ready to go. Keep a list of what should be in the bag, and when you get home, make sure to immediately replace anything you used. A backpack, large carry bag, or small rolling suitcase may work well as a Go Bag.
3. Pack by system or medical device. If your child has multiple medical technologies, such as a feeding tube and a tracheostomy, or your child has multiple medical conditions, such as feeding and bladder problems, you may want to consider packing by system or condition. For example, everything related to the feeding tube can be in one box or bag, while everything related to cathing or trach care can be in another. Some parents use large pencil cases or travel packing cubes to separate items. Then you can simply grab the relevant case or cube when you need to do a procedure or feeding!
4. Make sure you have portable equipment. There are portable versions of almost every device out there, but that doesn’t always mean you will get them automatically. Your DME or home health supplier may not know what is the best option, and sometimes companies or insurers automatically go with the cheapest option instead of the best one. Are you struggling with an old feeding pump that weighs a ton, or the massive old dinosaur CoughAssist device? There are now tiny feeding and IV pumps, portable CoughAssist devices and ventilators, small pulse-oximeters, and portable suction pumps. Make sure you have the very latest equipment, in the smallest sizes that meet your child’s needs.
5. Don’t forget power! Most medical devices either require battery power or electrical charging. In either case, don’t forget the power! Power cables and chargers are the most common items to be forgotten. Bring along an extra set of batteries for devices that run on regular batteries. For those items that run on specialized batteries, see if it is possible to get a backup battery to carry along for security. For example, both the Trilogy ventilator and CoughAssist device can run on the same small, replaceable battery. If your child requires a lot of power, consider bringing along an inverter to charge in the car, or a portable battery, such as a marine battery, to power all the equipment in an emergency.
6. Set up your backup equipment as travel equipment. In many cases, insurers and DMEs will allow you to have a backup device if your child’s life is dependent on a particular item. For example, most children who use a ventilator for most or all of the day will be able to receive a backup ventilator. The same is true for IV pumps and suction machines. Many families choose to keep their backup equipment set up and ready to go for travel. They can simply transition from their home equipment to their travel equipment and be on the way immediately!
7. Prepare how you will carry the equipment. If your child has a wheelchair or medical stroller, you may be able to attach most of the equipment to the chair. Your DME and wheelchair provider should be able to help you attach a carrying case for a ventilator or an IV pole for a feeding or IV pump. Many wheelchairs can also be adapted with a tray beneath the chair for other equipment. Additional equipment, including feeding and IV pumps, as well as some pulse oximeters, can be clamped to the chair itself using clamps from your DME. Large, sturdy carabiner clips can also be used to hook bags for carrying oxygen, feeding pump backpacks, and other items. If your child does not have a wheelchair, you can choose to use a small luggage cart (with a lot of bungee cords) or even a collapsible granny cart. This will allow you to pull items instead of carry them.
8. Bring extras and be prepared for emergencies. If you always pack a bit extra, you will likely never run out, even if your child decides to soil five diapers in a row, or the extension set breaks in half twice. Make sure you think about likely emergencies and have equipment to handle them. Can you handle a trach or tube falling out? What if the vent dies? Also, bring along some handy fix-it equipment that can be used a variety of situations, such as medical tape, duct tape, and scissors.
9. Bring your emergency information. Children with complex needs should always travel with emergency information, even if they are just going around the block. At minimum, you should carry a piece of paper with your child’s name, primary diagnoses, and contact information for all parents/guardians and your child’s main physician. It can also be helpful to include a brief one or two page summary of your child’s condition, including medications. A great option is the AAP/ACEP Emergency form, created by pediatric emergency doctors specifically for this purpose.
10. Practice makes perfect! The first time you try to go out, it likely will take an hour just to get ready. Each time you repeat the process, you will get faster. Keep practicing, and soon you will be out the door in no time!