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Managing Daily Life

Managing Daily Life

Personal Care
Day-to-Day Moments
Emotional Support

Managing your child’s daily physical and emotional needs will get you feeling back to normal soon.

Brushing his/her teeth, keeping his/her tube site clean, and doing the little things that make him/her happy—these are all steps toward having a rhythm back in your daily routine. This is important for your child’s overall wellness. And yours.

Personal Care

YOUR CHILD’S MOUTH

Whether your child is receiving their feeding through a gastrostomy or jejunostomy tube, or through a nasogastric or nasointestinal tube, it's important to maintain good oral health. The following steps are recommended to keep your child's mouth as clean as possible. Follow any other special instructions from your child's healthcare team.

  • Brush your child's teeth, gums and tongue at least two times a day using a soft toothbrush and toothpaste. To moisten the mouth, use an oral sponge
  • Moisten your child's lips with lip balm or a lanolin-based moisturizing cream. To prevent chapping, encourage your child to avoid licking the lips if possible
  • Report bleeding or anything unusual in your child's mouth to your healthcare professional
YOUR CHILD’S NOSE

If your child is taking a feeding through a nasogastric or nasointestinal tube, the tube passing through the nose may cause mild soreness or you may notice some thick, crusty mucus in the nostrils. It is important to take care of your child's nose. Follow these steps:

  • Change the tape holding the tube in place daily. When re-taping, allow some slack so that the tube does not rub against the nostrils
  • Clean the nostrils at least once a day with a soft washcloth or cotton swabs moistened with warm water
  • Remove sticky tape residue with a special adhesive remover
  • Remove crusting on the nostrils with warm water on a cotton swab
  • Apply a lip balm or lanolin-based moisturizing cream to the inside edges of the nostril
  • Report any redness, bleeding or numbness to your child's doctor
YOUR CHILD’S TUBE SITE

If your child has a gastrostomy or jejunostomy tube, taking care of the skin surrounding the feeding site is very important.
Follow these steps:

  1. Wash your hands thoroughly
  2. Remove the old dressing and tape, being careful not to disturb the tube
  3. Cleanse the skin around the tube daily with soap and water as directed by your child's healthcare professional
  4. Remove any crusting around the tube site (use cotton swabs moistened with warm water)
  5. Check the tube site every day for signs of redness, soreness, swelling or unusual drainage; Report anything unusual to your child's healthcare professional
  6. Dry the skin around the feeding tube site thoroughly. Healed gastrostomy or jejunostomy sites usually do not need a special dressing. If you have been told to apply a dressing, follow the instructions from your child's healthcare professional
THE IMPORTANCE OF MAINTAINING ORAL STIMULATIONS

If your child is being tube fed and not taking anything by mouth, it is important to maintain oral stimulation. This is a normal part of feeding and promotes growth and development. It allows a younger child to develop skills for eating and swallowing, and helps an older child who has already learned these skills to maintain them while they are being tube fed.

Talk to your child's healthcare team for ideas about providing your child with safe opportunities to chew or suck.

Day-to-Day Moments

EATING AND SOCIALIZING

Mealtime is an important opportunity for socialization and development, and a part of life that children should be involved in and enjoy from an early age. Even though your child is being tube fed, being included in family mealtime and social events that involve food is just as important for your child as it is for you and your family.

Click here for tips on partaking in food-related gatherings

MANAGING FEEDINGS AWAY FROM HOME

As you become comfortable and experienced with tube feeding, it will likely feel like just another part of life. Being able to manage tube feedings away from home can provide you, your child and your family with the opportunity to have a more flexible schedule, and do things you enjoy. Planning and organizing to make sure you have all the equipment and formula your child needs are key to managing tube feedings away from home.

Click here for tips on getting out and about

Speak with your child's healthcare team for guidance on managing feeds away from home, based on how your child is being tube fed and their feeding schedule. Your healthcare team will also help you to create a feeding plan for your child if they are attending school.

ADDITIONAL TIPS & INFORMATION

For more tips and information about skin care, tube care, helpful products, social, travel and school suggestions, including swimming with a tube, dressing more comfortably and dining out, visit Discover Resources

Emotional Support

Along with physical care, emotional support is just as important for your tube fed child.
Managing tube feeding for your child and measuring progress are parts of physical care, but your child’s emotional needs are critical, too.

HOW A POSITIVE ATTITUDE CAN HELP

Once a feeding tube is in place, it will take some time for everyone to adjust, especially your child. This is a big change, and every child will react differently. To make the transition as smooth as possible, highlight the positive effects the feeding tube will have on his growth and development.

You can even talk about how the umbilical cord nourished your child before he was even born! That’s nature’s most amazing way to “tube feed”!

It may be difficult to understand now, but tube feeding can and will become second nature over time. It's very possible for a child to eventually view the tube as a natural part of his body.

How to Adapt to Social Situations

A feeding tube can make your child feel left out when he cannot eat birthday cake at parties or order off the menu at a restaurant. Speaking to friends and classmates about tube feeding will help alleviate any confusion and allow your child to feel more comfortable in his/her surroundings.

It is best if a child is comfortable enough to provide factual answers. Sitting down with your child's teachers and making sure they understand tube feeding will also help.

How Will a Child React to a Feeding Tube?

Once a tube is in place, your child may need to overcome feelings of dependence and worry. He/she may feel overwhelmed or have challenges with body image. Encourage open discussions to uncover and talk about any possible fears and concerns.

Just because he/she uses a feeding tube doesn't mean your child can't take part in family mealtime. Allowing your child to make decisions such as what to do during this time can also help ease feelings of anxiety.

Brothers and sisters play an important role too

This is a family journey, and some families find that encouraging sibling participation is a plus. 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 everyone involved. If family dinners and story time are part of the routine, do your best to carry on those activities as if nothing has changed.

Click here for other Resources

Making progress on the journey

When people ask when is your child going to stop using a tube to eat, it’s fine to say, “We don’t know.” For now, the focus can be on the immediate goals. Surviving that first day home. Learning how to master a set-up technique. Transitioning from one type of formula to another. Growing stronger and taller every day. Thriving! Having a family dinner together at a favorite restaurant, hearing good news at an appointment with the doctor. With tube feeding, there are many markers of progress! “Wins”—both big and small—are worth celebrating.

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