Living with a feeding tube

• Wait at least five days after surgery before swimming or bathing. If you have a PEG tube, ensure the tube is securely taped to abdomen with waterproof tape.
• Children can lie in any position they find comfortable including their stomach. The tube can be covered up with clothes to try and keep the child from pulling or playing with tube.
• Children can participate in sports once the new site is no longer tender. For PEG tubes, ensure they are securely taped to abdomen. If there is a blow to the abdomen, there may be some pain, but it is not an emergency unless there is severe pain, persistent pain that does not improve, bleeding, or bruising. If this occurs, then contact your doctor.

Care of the stoma site

• DO NOT routinely turn the new tube for 6 weeks following surgical placement.
• DO NOT deflate the balloon on a new tube for at least 6 weeks after surgical placement.
• ALWAYS wash your hands before caring for stoma or feeding tube. Hand washing is one of the best ways you can prevent the spread of illness.
• Clean area around the tube at least twice a day and inspect surrounding skin for any signs of redness, irritation or infection.
• Clean around the tube with a clean wash cloth, cotton balls or Q-tips and some warm, mildly soapy water - rinse and dry the area well.
• Gently clean under the disk or around tube, the outside of tube and skin surrounding the tube with warm soapy water. RINSE with warm water and then gently pat dry or let air dry.
• Exposure to air is an excellent way to heal skin and to keep it in healthy condition.
• When securing tube with tape, rotate the position of tape so it does not cover the same piece of skin each time - this practice will help to maintain healthy skin and decrease irritation.

Care of feeding tube itself

• Inspect the feeding tube for cracks and or leaks.
• For PEG, MIC G and Foley tubes - KNOW the correct length of your child’s feeding tube. Measure the length of the tube that is on the outside of the body. If it is shorter than usual, gently pull on it until it is appropriate length. If it is longer than usual- DO NOT USE the feeding tube and call your doctor. Knowing the correct length of the feeding tube helps ensure that tube is in correct position in the body for safe feeding.
• Low profile tubes may require measuring if there is a weight gain or loss or change in abdominal girth - tubes can be measured to ensure they fit correctly.

• After every feeding, wash equipment (feeding bag, tubing, etc.) with hot soapy water and use a bottle brush if necessary to ensure all formula is removed from the bag. Rinse well with hot water. Make sure to remove excess water from the feeding set and adapters.
• Between feeds - wrap the equipment in a clean towel and store in the refrigerator. The cool temperature helps decrease the growth of bacteria.
• Once a day syringes need to be taken apart and washed with hot soapy water, rinsed and let air dry.
• AFTER LAST FEEDING of the day, wash the bag and tubing as usual with hot soapy water and then RINSE WITH A VINEGAR SOLUTION (1/4 cup vinegar to 1 cup water). Rinse again with hot water and store as usual in the refrigerator.
• Feeding bags and syringes are usually changed twice a week or earlier if necessary.
• Adapters and connectors are changed every two to four weeks (sometimes more often if feeds are continuous).

• If the tube feeding bag is starting to smell (sour) or starts changing to a different color. THROW IT AWAY.
• Allow formula to warm up to room temperature before using. Cold formula can cause cramping.
• DO NOT MICROWAVE the formula, as this can cause the proteins in the formula to break down.
• Throw out open containers of formula if not used within 24 hours, even if they were refrigerated.
• Throw out any formula that has been left at room temperature for more than four hours.
• REMEMBER that hand washing is key in the prevention of spreading bacteria.

It is important for maintaining the normal conditions of the mouth when children cannot have foods orally.

Steps you can take to ensure proper mouth care:

• Rinse your child’s mouth out four to six times a day with water, mouthwash, a cloth, or Toothette.
• It is important to make sure your child’s teeth are brushed twice a day.
• Keep lips moist.
• At the advice of a doctor, candies, soothers, etc. can sucked to help with the flow of saliva - oral stimulation.

• It gives the child sensory experiences in an around the mouth and encourages use of the lips, jaw and tongue.
• Oral stimulation is used in children who cannot take food by mouth because the mouth is rarely used (stimulated) and it can develop a hypersensitivity to touch which makes the possible return to oral foods much more difficult.
• Through stimulating the mouth with touch, tastes and different temperatures of food, hypersensitivity can sometimes be prevented.

Oral stimulation is important because it:

• allows a child to develop and maintain movement patterns for eating and swallowing
• prevents hypersensitivity
• allows the child to experience pleasures associated with tastes, textures, smell, touch and social time surrounding eating

What you can do to promote oral stimulation?

• before feedings, use a wash cloth and gently wash face, wash cheeks and forehead first and slowly move towards mouth, if child shows distress, stop and try again the next day
• a soother, toothbrush, child’s hand can be used in the mouth
• associate meal time and eating with a pleasurable time
• consult your physician or occupational therapist for additional ideas and advice on what your child can have in their mouth