Swimming, Traveling, and Campingadmin2021-01-19T14:53:48+00:00
Yes, Almost All Kids with Feeding Tubes Can Swim!
Children who have NG-tubes have no restrictions on swimming, other than making sure the tube is closed, clamped, and not hooked up to a feeding pump.
Most children with G-tubes, GJ-tubes, and J-tubes are also able to swim and splash in the water without too many restrictions. There is one exception to this rule: children with brand new stomas that are less than two months old should not swim.
In general, most doctors recommend sticking to well-maintained chlorinated or saltwater pools and oceans when swimming, as lakes and rivers may have unsafe water quality. If you do want your child to swim in a lake or river, it is best to first check the water quality of the body of water, and then ask your child’s doctor. The CDC’s Healthy Swimming website is a good place to start to learn about water quality. Check the EPA’s Beach site to make sure there are no warnings about the beach you plan on visiting.
Public hot tubs are not advised, as the hot temperature of the water tends to breed bacteria.
If at all possible, unhook your child from the feeding while swimming, and remove the extension set if applicable. Clamp long tubes or NG-tubes and secure them so they do not get caught while swimming. If you will be in a sandy area, you may want to cover the entire tube site and feeding tube with a clear, protective dressing, such as AquaGuard or Tegaderm. Press and Seal plastic wrap and waterproof tape can also be used.
Children hooked up to feeding pumps should not submerge the pump in the water. The Moog Infinity pump is designed to be somewhat waterproof, so it can be worn while splashing, though you may still want to place it in a plastic zipper bag for greater protection. Children with the Kangaroo Joey pump should avoid both splashing and swimming while the pump is in use. Some children have used extra long extension tubing to allow swimming while keeping the pump far away and dry, but this must be done with extreme caution, and only with children who understand the limitations of their tubing.
If a child cannot be disconnected from the feeding pump to swim, a dry suit may be another option. This type of suit forms a complete seal, allowing a child to wear the feeding pump while swimming. Unfortunately, dry suits must be custom fit and are quite expensive.
Children with compromised immune systems or other unique feeding tube issues should consult their physicians before swimming.
Traveling these days is always a challenge, especially if you will be taking a plane or even a train. But it can be done, with a little preplanning. Here are 5 simple steps to making your trip work.
Talk to your doctor. At least a month prior to travel, talk to your doctor about your travel plans. Ask your doctor to write a letter that explains your child’s medical condition. Make sure it includes a complete list of medical equipment or supplies your child will have while traveling. Print it out, as only paper documentation will get you through security. See this sample letter from the Oley Foundation.
Create an emergency plan. You need to have a plan in place in case something happens. Research where the closest children’s hospital is to your destination. Ask your doctor for a recommendation for a hospital or doctor in case something happens. Also, make sure to plan for any possible emergencies, such as a tube that falls out, a broken pump, or a lost shipment of formula. Consider bringing your child’s medical records, or at least a summary of them, such as a copy of the AAP/ACEP Emergency Information Form for Children With Special Health Care Needs.
Talk to your homecare company. You will need to bring along medical supplies and formula, which can get quite heavy. Ask your homecare company if formula and supplies can be shipped to your destination, or if they have a local branch that can deliver supplies. Make sure you know who to contact if there is a problem with your pump or charger during the trip. In some cases, the homecare company may even provide an extra backup pump for travel.
Determine what you need to pack. More on this below.
Contact the airline, train, or transportation authority at least 72 hours in advance.
See our page on Organizations for information on Travel Assistance Organizations.
What to Pack
Remember Your Charger!
The number one forgotten item when traveling is the feeding pump charger or power cord. Always double check to make sure you have packed yours. Charging cables are unique to most feeding pumps and cannot be purchased commercially or replaced easily.
This is a general list of things you might need or want to pack for a trip with a child who has a feeding tube.
Feeding pump and backpack
Feeding sets (bags)
Feeding pump charger
Feeding syringes or gravity bags
Extension sets and adaptors
Syringes for flushing
Venting supplies, such as syringes, Farrell bags, or venting tubes
Water for flushing while traveling — consider bringing 60ml sterile water containers for air travel or travel abroad
Formula, breastmilk, or blenderized meals — with ice packs if necessary
Small syringes, pill crushers, or medicine cups for medications
A tube replacement kit, including at least one extra tube, lubricant, a syringe for the balloon port if applicable, and tape
Tape, gauze, and dressings as needed
Parent tip: consider bringing a small cooler or insulated lunchbag to transport formula and medications with an ice pack. You can also purchase small refrigerators that plug into your car.
Airline and Train Regulations
It is critical to contact the airline, TSA, or Amtrak in advance if you will traveling with medical supplies. There are many regulations about what can be carried on, what can be checked, and what must be shipped.
For air travel, a good place to start is the TSA Cares hotline at 1-855-787-2227 or [email protected]. The following TSA-related links will help you find general information for traveling with medical supplies.
From time to time, headlines in the news highlight stories of people who run into trouble while traveling with medical supplies and liquids. These stories can be scary for anyone who is considering flying with these items, but don’t let your fear of the TSA screening process stop you from traveling. While there are no guarantees that everything will go perfectly, ample preparation ahead of time will greatly reduce your risk of difficulty with the screening process. Here are a few things to keep in mind when preparing to travel.
1. You can and SHOULD call the TSA Cares hotline before your trip. The purpose of TSA Cares is “to assist travelers with disabilities and medical conditions.” According to the TSA’s website, it is recommended that passengers call the hotline 72 hours prior to traveling. Representatives at TSA Cares are able to give advice specific to each individual’s particular needs that will aid in the security screening process, and give the traveler a better idea of what to expect when they arrive at the security checkpoint. Moreover, the TSA Cares program can provide a TSA agent to escort the traveler through the airport and assist in the screening process. The hotline’s toll-free number is 1-855-787-2227 and the email address is [email protected] The hotline’s hours of operation are Monday-Friday from 8am-11pm EST and weekends and holidays from 9am-8pm EST.
2. Use the TSA’s Disability Notification Card. This card can be printed from this link and handed to a TSA agent upon arriving at the security checkpoint to make screeners aware that you will need some type of additional consideration during the screening process. The card will not get you out of any part of the screening process, but it will discreetly alert them to your needs and hopefully help the process to go more smoothly.
3. You CAN carry more medical liquids through security than would be allowed through the 3-1-1 rule. Medical liquids such as formula, breast milk, baby food, and liquid medications are allowed through security checkpoints. The TSA website warns, however, that travelers carrying medical liquids MUST declare medical liquids at the beginning of the screening process due to the additional screening measures required. If you or your child require a specialized ready-to-feed formula that cannot be purchased at a retail store in the event that checked baggage were to get lost, it is a good idea to carry enough formula on board for 2 days. That would hopefully allow enough time once you’ve reached your destination to make emergency arrangements with your supply company or find someone local to the area you are visiting that could spare enough extra to hold you over until your baggage arrives. Any necessary medications should ALWAYS be brought in carry-on luggage.
4. For longer trips, ship supplies and formula to your destination ahead of time if possible. This will prevent you from having to pack all of your needed supplies in your checked luggage.
5. Check with your airline about waived baggage fees for medical supplies. Most airlines that charge fees for checked baggage will allow one bag of medical supplies to be checked without paying the usual baggage fee. You may still want to pack one or two days’ worth of supplies in a separate checked bag as well, just in case the medical supply bag arrives late.
6. Pack your liquids last. If they are the last thing you put in your carry-on bag, they will be easily accessible when it’s time to go through security. Put everything in zippered plastic bags so that when you get to the security checkpoint, it will be easy to pull them out without having to dig through your whole carry-on bag.
7. Print all of the TSA policies that pertain to what you’re carrying with you. While the TSA works to ensure proper training for all its agents, there is always a chance that you will encounter an agent who does not have experience with or a thorough understanding of the policies pertaining to medical liquids and supplies. Print any policies from their website that may apply to your situation and keep them in a zippered plastic bag inside the same bag with your medical liquids where they are easily accessible. If anything comes into question, you can quickly identify the policy that pertains to that item. It is also not a bad idea to have a letter from a physician listing the medical liquids, supplies and equipment that you will be traveling with that may affect the security screening process.
8. Don’t send your liquids through the x-ray machine in a closed carry-on bag. If you have your cans or bottles of liquid formula and medications in zippered plastic bags, it’s easy to pull them out and put them in one of the plastic tubs provided at security. (The plastic bag will also keep them from getting dirty since people put their shoes in those tubs, too.) If you have a soft cooler with medical liquids and ice packs in it, unzip and open it before putting it through the x-ray machine and set it into one of the provided plastic tubs. Before any of your medical liquids go through the x-ray machine, make sure that the TSA agents who are doing the x-ray screening see what you have and hear you say that you are sending medical liquids through the machine so they know what’s coming before it pops up on their viewing screen. Most other medical supplies, such as syringes, pump bags, extension tubes, and medical tape can go through the x-ray machine.
9. It’s okay to ask your TSA screener to put on a clean pair of gloves before handling your medical supplies. Ask nicely, and insist if you need to. Explain that because of the individual’s medical conditions, you are doing everything you can to avoid contact with germs and cross-contamination. It may be a good idea to remind them to put on fresh gloves after coming into contact with your medications as well.
10. When you travel with medical liquids, you WILL be asked to open them, or they may be opened for you. The TSA’s website states, “Liquids, gels, and aerosols are screened by X-ray and medically necessary items in excess of 3.4 ounces will receive additional screening. A passenger could be asked to open the liquid or gel for additional screening. TSA will not touch the liquid or gel during this process. If the passenger does not want a liquid, gel, or aerosol X-rayed or opened for additional screening, he or she should inform the officer before screening begins. Additional screening of the passenger and his or her property may be required, which may include a patdown.” If you are carrying ready-to-feed liquid formula in cans or tetra paks, know ahead of time that you will most likely have to open them and bring something to pour the formula into, such as a spare feeding pump bag or empty baby bottles with tight-fitting lids. Even an empty plastic water bottle will do. To avoid concerns over opened formula spoiling, travel with a small soft cooler and ice packs. Opened formula is good for 24 hours when it is kept refrigerated. Medications will need to be opened and tested as well. Even though the TSA doesn’t require it, it’s a very good idea to put bottles of liquid medications in zippered plastic bags in case of spills. It’s also a good idea to make sure the lids are on tight after they’ve been tested and before you put them back in your carry-on.
11. Frozen items do not count as liquids as long as they are frozen solid. The TSA website states that “Frozen items are permitted as long as they are solid and in a ‘frozen state’ when presented for screening.” This includes ice packs used to keep formula and medications cold. However, if they are at all thawed or slushy, they will be subject to the rules and regulations for liquids. For individuals who use a blenderized diet or breast milk for tube feeds, this would also mean that pre-blended formula or breast milk that has been frozen solid would be permitted without being subject to the additional screening for liquids as long as it is not partially thawed.
12. Allow extra time in case you run into delays at security. Of course this is advised for all travelers, but going through the security screening process with larger-than-usual quantities of medical liquids and individuals with special needs means can take extra time. Find out the recommended arrival time for the airport you will be departing from and add an extra half hour or hour to it, just in case. You may end up sitting at the gate for a longer time than you’d like, but that is much better than missing your flight. If you have allowed ample time before your flight, you will not have the added stress during the security screening process of wondering if you’ll miss your flight or not.
13. Be polite. Patience and a positive attitude can go a long way in helping the screening process go smoothly.
Many parents have asked, “how can we continue camping with a child who is tube fed?” The answer is, simply, to take the feeding pump or supplies with you. Feeding is hardly different than feeding at home and very similar to feeding on daily outings.
You will need a few extra supplies, and you will likely need to make arrangements for accessing electricity, at least some of the time. In addition, you will need a cooler that is continuously filled with ice.
Relax and have fun. Camping with a child who is tube fed is not difficult, and with a little extra preparation can be done with great ease.
Parent Tip: Always bring bottled water for flushing your child’s tube, just in case you don’t have a ready source of clean water available.
What to Pack for Camping
Make a list of the supplies you use to feed at home, such as a feeding pump, feeding bags, extension sets, syringes, tape, gauze, or dressings, and of course your emergency kit. Then add:
Pump charging cord
Power extension cord
Formula, pre-made blenderized foods that are frozen in glass jars, or commercial blends
Can opener, if needed, or anything else you normally use to prepare your child’s food
Storage container if not all of the formula is used at once
Cooler filled with ice or ice packs
How Do I Feed Without Electricity?
Formula feeding: feed as usual and store leftover formula in a container in the cooler.
Blenderized diet feeding: make and freeze meals at home in glass jars and then load the frozen jars into the cooler. The meals stay frozen for most of the camping trip. In the morning, take the food out for the next day, let it thaw, then replace into the cooler. Before pouring into the feeding bag, shake the jar to mix the blend. Use a whisk to stir the food around to smooth it out if needed. Use baby wipes to clean up spills. Bring a backup, such as formula, a shelf-stable blend, or stage 1 baby food, in case of spoilage.
Flushing: flush the extension tube with bottled water, rinse the syringe with bottled water and put away. Use a new syringe each day. If you remove the extension tube after every feeding at home, flush the extension tube again with bottled water and set aside in a plastic bag for the next feeding. You can also put the extension tube in a plastic bag and store in the cooler until the next feed.
Charging the pump: If possible, reserve a campsite with electricity and simply charge the pump like you do at home, either between feeds or overnight with the extension cord plugged into the electricity box and routed through the tent to her pump. If your campsite does not have electricity, you can charge the pump in the group pavilion between feeds. Charging in little bits, more often throughout the day, will keep the pump adequately charged. You can also use a car adapter to charge the pump in an emergency. Several different car charger options are available for purchase.
When you need ice packs: One option is to take Ziploc bags and fill with ice. Wrap the bags in paper towel to absorb any melted water. Place food and ice bags in your day trip cooler to keep the food bag cold. This method would be preferable if you are in a remote camping location without electricity or a way to freeze ice packs. Another option is to take ice packs and ask the camp desk to keep the ice packs in their freezer overnight to stay frozen.