Home Tube Feeding
Home Tube Feeding

Tips for Emotional Support:

• How Can I Help My Child with the Emotional Implications?

  Your child will need some time to adjust emotionally to being tube fed. This is a big change, and each child will react differently. A positive attitude on your part will help your child see the introduction of tube feeding as a way to help him or her learn and grow.

  It may be difficult to fathom now, but tube feeding can and will become second nature to your child and your family. Your child may even eventually view the tube as a natural part of the body.
• How Will My Child Feel About the Tube?

  Your child may have to tackle feelings of dependence and worry. He or she may feel overwhelmed or have challenges with body image. By encouraging open and honest discussions with your child, you'll be able to uncover and relieve fears and concerns.
  
  Continuing to include your child at family mealtimes and when making decisions such as what to do during feeding can also help ease feelings of isolation.
• How Can I Help My Child with Social Situations?

  Social settings may be particularly trying. Your child may feel left out when he or she cannot eat birthday cake at parties or order off the menu when going out to eat. Explaining the reasons why your child uses tube feeding to friends and classmates will help alleviate any confusion and make your child feel more comfortable.

• What About the Rest of My Family?

  This is a family journey, and some find encouraging siblings to participate helpful. Having the help of other family members can build support and better understanding.
  
  When adjusting to tube feeding, it's important to try to maintain as much normalcy as possible for all your children. Continue family dinnertime and story time if they are parts of your normal routine.
• Where Can I Look for Emotional Support?

  Outside resources and support groups can provide additional help and understanding. The Oley Foundation has helpful tips and other information to help your child live better while being tube fed at home. It also can connect your child with local mentors who share similar experiences with you and your family.
  
  A number of additional online communities exist, filled with people going through similar experiences who can offer understanding and empathy. Many parents find connecting with others helpful while adjusting to tube feeding. Some of your peers will be able to share with you what works for them and their families as you learn what works best for you and yours. Your child will also be able to connect with other children to help feel more comfortable with being tube fed.

Practical Tips:

• Brushing Teeth
  • Brush teeth, gums and tongue at least twice a day.
  • Floss at least once a day.
  • Using mouthwash to freshen breath is okay.
  • Apply lanolin or petroleum jelly moisturizer to your child's lips.

  • Some older children may use sucking candy, chewing gum or oral spray to keep their mouths moist. Some infants and children can use pacifiers during feedings. Check with your home care nurse first.
• Caring for Your Child's Tube Site

  Once your healthcare team explains how to care for your child's tube site and how to prepare his or her tube and formula, and as you get more practice, you will start to feel more comfortable with the day-to-day tasks involved in tube feeding.
• Administering Medicine

  Your child will be able to receive medications through their gastrostomy tube. If your child uses a duodenostomy tube or a jejunostomy tube, you will want to check with the pharmacist or doctor first to make sure the medicine will be absorbed correctly if it is delivered to the small intestine instead of the stomach. Your healthcare provider can provide specific instructions, but general tips to keep in mind include:

  • Liquid medications are easier than tablets, but if a tablet is the only option, it can be crushed into a fine powder and mixed with warm water.
  • Enteric-coated tablets and time-release medications should not be crushed, and medications should never be mixed or added to formula or feeding containers.
• Bathing

  Your child will be able to shower and take baths and even go swimming. Before submerging your child's tube in water, it's important to remember to close the cap. You should also wait at least one month following insertion before submerging the tube, to make sure the site is completely healed.

• Helping at School

  Including a representative from your child's school on the healthcare team will help ensure he or she receives the best care throughout the day. Your child is most likely not the first student at the school to have special feeding needs. Many schools can access resources for feeding assistance. Working with your child's teacher, school nurse and any other aide who will be involved will help you feel confident your child is receiving the best care.
  
  Including school nurses in training will help them to best do their job ensuring children have the care they need at school and they will respect the consideration you gave them. They will also be helpful when explaining why your child has a tube or a button to classmates.

Tips for Troubleshooting:

Usually tube feeding requires little additional care, but sometimes problems can occur. Knowing what to watch out for and what you can do will help ensure your child experiences as little discomfort as possible.

	Trouble	Cause	Possible Solutions
	Constipation	Lack of fluids Medication Formula tolerance	Encourage your child to use the bathroom as soon as he or she feels the need to go. Begin keeping track of when he or she has bowel movements so you can more easily notice if something is wrong. Continue to allow your child to be as active as he or she normally is. This may help stimulate bowel movements. Adjust or change medications. Give your child additional fluids or feeding formulas.
	Diarrhea	Medication Not adequately absorbing nutrients Feeding too quickly Formula tolerance	Change your child's medications or feeding formula. Change the way formula is mixed and equipment is handled. Adjust the feeding volume or timing.
	Dehydration	Some medications Fever Vomiting Not consuming enough water	Give your child extra water between or after feedings (upon your doctor's recommendation). Be aware of any of your child's medications that cause dehydration.
	Clogged Tube		You may try to dislodge the blockage yourself; however, if the clog is stubborn, seek the advice of a healthcare practitioner. Follow the step-by-step procedure
	Out-of-Place Tube		Do not use the tube. Check how far it has moved and tape the tube so it does not move any further. Call your healthcare professional to reposition the tube as soon as possible.
			If the tube comes out completely, take your child to the emergency room. It is very important to get the tube back into place before the stoma closes. Replacing the tube is a procedure that needs to be performed by a healthcare professional. Do not attempt to put it back yourself.