2-4 weeks post-surgery: Most children will have a follow-up visit for a post-operative evaluation​

6-8 weeks post-surgery: Most children will have a follow-up visit to change out the button on their G-tube for the first time, known as a tube change. At this visit, families will be taught how to do tube changes at home, usually every 3-6 months as long as the G-tube is needed​.

Yearly: Visit with surgeon or gastroenterology team to assess tube and make any needed changes, children typically require larger tubes over time as they grow

**There may be different schedules depending on your hospital and CF care team​

Bathing: After G-tube placement, your child can shower 24-48 hours after the procedure, but typically children are recommended to avoid tub baths or submerging their G-tube for 1-2 weeks

School: Children can typically return to school within 3-5 days after surgery​

Swimming: Swimming is a great form of exercise and children with G-tubes can typically resume swimming within 2 weeks after surgery​

Other activities: Return to more strenuous activities, such as soccer or gymnastics may take longer, at least 4-6 weeks after surgery. You should discuss with your surgeon or gastroenterology team how to keep your child’s G-tube protected during their preferred activity or sport.

When you and your care team agree together that your child no longer needs their G-tube, it can usually be removed in clinic.

After removal, the area is covered with a dressing and usually the hole will close on its own within 1 to 2 weeks, leaving a scar.​

Sometimes the area where the G-tube used to be may not fully close spontaneously and your child might need a surgical procedure to completely close it. ​

It is extremely important to make sure your child’s G-tube stays in place for the first 6 to 12 weeks after initial placement while the connection from the skin to the stomach heals.

​If the tube falls out or is accidently pulled out also known as “dislodged” during this healing phase it can be an emergency. Your team will discuss how to know if your child's G-tube is dislodged. If your child’s G-tube becomes dislodged at home during the first 6-12 weeks, you will be advised to have your child evaluated in the hospital where medical professionals can replace it and be sure it is ready to use again for feeds.

After 6-12 weeks of healing, the tube can be changed out in clinic for the first time, and you will be taught how to replace the tube at home. After this time, if the G-tube becomes dislodged your child will not need to be urgently evaluated if it goes back in easily.​

Tube dislodgement is considered a common G-tube complication, with rates ranging from 3-50% of people experiencing this complication.

Granulation tissue is new tissue that develops as a normal response to injury. Granulation tissue can be caused by friction as the tube rubs against the skin. The new tissue has a beefy or bumpy texture, hence the name "granulation" and will typically have tiny blood vessels that make the tissue appear pink.

Granulation tissue is not dangerous but can cause bleeding if it becomes irritated. It can be commonly be treated at home with a topical medication. At times it may require evaluation in clinic or surgical removal​.

Granulation tissue is considered a common G-tube complication, and most individuals will experience this complication at some point in time. It is important to regularly check how your child’s G-tube is sitting against their skin.

A G-tube can cause pressure and irritation at the level of the skin, which can cause redness around the G-tube, known as dermatitis. If this occurs, it will typically improve with cleaning with warm soapy water and allowing the area to stay dry. Sometimes the skin will need a cream to protect the area.

If the redness spreads further outward from the G-tube or is tender to touch, it could be the sign of a skin infection, known as cellulitis. If an infection develops, your child may require an antibiotic you can place on the skin (topical antibiotic) or they may require oral antibiotics.

Skin irritation is considered a common G-tube complication, and most individuals will experience this complication at some point in time. Infection is less common and some individuals never experience this complication​.

Leakage: All G-tubes have some degree of leakage of stomach fluid around the tube onto the skin. Some G-tubes leak more than others, but leakage is considered a common G-tube complication, and most individuals will experience this complication at some point in time.

Leakage may be a sign of a mechanical problem with the G tube, such as not enough water in the ballon, an opening that has become too big, or a tube that no longer fits correctly. Usually, the leakage is minimal and easily manageable, but if severe, can cause significant irritation to the surrounding skin.

Clogging: G-tubes can become clogged due to build up of feeds or medications. Clogging can lead to the G-tube not working properly. This complication can be typically be prevented by providing water flushes before and after feeds and as well as before and after medication administration. Your CF care team can provide tips for preventing clogging or make suggestions for different declogging methods.

Gastroesophageal reflux (GERD) or reflux: GERD is the movement of stomach contents into the esophagus and is common among people with CF. Many people with reflux will continue to have reflux after G-tube placement or it could get worse, due to the stomach getting over distended with feeds.​ Reflux can increase the risk of aspiration, or fluid entering the lungs​ and will be something to address with your CF care team.

Bloating, Vomiting or Nausea: Bloating or nausea is commonly experienced with tube feeding, particularly in the morning for children who receive continuous overnight feeds. Some individuals may have increased vomiting from G-tube feeds. Your CF care team can work with you to adjust your child’s feeding schedule to help address these symptoms. These side effects are considered common for children with G-tubes, meaning most children will experience these side effects while using their G-tube.

Diarrhea: All forms of tube feeding can cause diarrhea. Your CF team can work with you to adjust your child’s feeding schedule to help address these symptoms. While not uncommon, only some individuals will experience this side effect of G-tube feedings.

It is normal for your child may have a lot of different feelings about their G-tube. Many children, particularly as they get older, prefer to always have their G-tube covered. Other kids are fine with showing of their G-tube.

You can talk with your CF care team about ways to help your child view their G-tube as a positive part of their body and health.

For most children, using the G-tube becomes a routine part of their care. Typically, families do not feel that it affects their development or social opportunities. Some families may request accomodations at school to help their child navigate their tube feedings but most families feel it does not interfere with school. Some families prefer not to give feeds in public due to concerns about maintaining their child’s privacy, and some families prefer overnight feeds to avoid G-tube feeds during the day. Like everything with CF, having a G-tube requires balance and finding out what is right for yoru child and your family.

Notably, feeling strong and healthy can help them participate in more age-appropriate activities. However, for some kids, the G-tube can add anxiety about bumping or touching the G-tube area, which may make them avoid certain activities they previously enjoyed.

Most children typically experience weight gain and growth within a few months of consistent use of tube feeds. Many families are surprised by how fast their child gains weight when they are getting their feeds as directed by their CF care team.

However, for some children this process may take a longer period of time and require personalized adjustments. Some children with G-tubes may still have challenges with weight gain, but this is the minority of people. Some children with G-tubes may still have challenges with weight gain, but this is the minority of people. Your CF care team will work with you to find the regimen that works best for your child.

Many families report that navigating sleep with a G-tube can be a challenge. While children can lay on their tummy with a G-tube, some children may find it uncomfortable lying on their bellies when they sleep due to the G-tube.

If your child is getting continuous G-tube feeds overnight, your child’s G-tube pump may alarm due to blockage in the tubing or when the feed is finished. This can wake up both you and your child more often than you would like.

Additionally, some caregivers worry about the G-tube tubing getting tangled around their child. Often if children are active sleepers, they can accidently discontinue the tubing which can lead to formula leaking onto bedding. Many families suggest getting waterproof mattress covers to help protect bedding and always having spare bedding close by.

Once the G-tube site is healed, children with G-tubes can resume any of their preferred activities.

Depending on the activity, such as those that may involve colliding with another person, your team will recommend your child keep their G-tube covered to prevent dislodgement, or the accidental removal of the G-tube.

G-tubes are typically changed every 3 to 6 months due to wear or tear or breakdown in the tubing that can increase leaking or cause the G-tube to accidently fall out. For most children, changing out their G-tube is easily done at home.

For other children, it can be painful and difficult for families to change at home. This may mean you would need to be seen by your surgeon or gastroenterologist for G-tube changes in the office.

Children who receive overnight continuous G-tube feeds are usually not hungry at breakfast time, but typically their appetite will be normal the rest of the day.

While an uncommon complication of G-tube feedings, some children who receive tube feedings may lose interest or enjoyment in eating by mouth. Your CF care team, and if needed a feeding specialist, can provide guidance to help ensure G-tube feeds help supplement what your child eats at meals or during the day. You may be recommended to continue to encourage your child to take their medications by mouth to ensure they do not become too dependent on their G-tube.

While G-tubes can add more day-to-day work for caregivers, many parents report that tube feedings quickly become part of their normal routine, similar to airway clearance and other medications. Many parents are surprised by how quickly and easily they become comfortable with tube feeding.

For overnight feeds, having a bedtime routine is helpful. After bath and teeth brushing, many parents set up feeds while children are getting on their pajamas or during story time. Set up typically requires adding formula to the feed bag, setting up enzymes for overnight feeding and turning on the feeding pump. When your child wakes up, you will discontinue feeds on their feed pump and either wash out the feed bag and tubing or throw it away. Finding ways to have your child participate in the bedtime or wake up routine can help them feel involved in their G-tube care and learn to be more independent with caring for their G-tube.

It is important to note that your child’s bedroom will look a little more “medical” with their G-tube equipment and feeding supplies. Many families have developed creative ideas to help integrate G-tubes into their child’s room and your care team can also share some tips and tricks. Many families do recommend waterproof mattress covers in case there are night accidents where tube feedings might leak.

As with your child’s other medications, working with your insurance company or DME company to ensure tube feeding supplies are delivered to your home on time or when your child needs them can be challenging and time-consuming for some families.

If your child has pancreatic insufficiency, getting enzymes with their tube feedings is just as important as getting enzymes with any other meal or snack. It will be important to discuss with your CF care team which options are available for your child. These options can vary based on your child’s age, their health insurance coverage, or if they are getting bolus feeds or overnight feeds.

Bolus feeds: Enzymes should be given right before your child receives a bolus of formula. Children will either take these by mouth or caregivers will mix the enzyme beads into applesauce in a large syringe and give the applesauce mixture through the G-tube right before they get their formula bolus.

Continuous feeds: Since your child will receive their formula continuously overnight while they are sleeping, you do not need to wake them up to give enzymes. Instead, you will “pre-digest” the formula by adding crushed enzyme beads to the bag of formula. Some children may be able to use a medical device (cartridge) that connects to the G-tube tubing (RELiZORB® or immobilized lipase) and helps process the fat in the formula before it reaches your child’s stomach. Your child may still need to take enzymes orally before bed.

Traveling with G-tube supplies can require extra planning. Many families will have a special travel bag with all the necessary supplies.
Wherever you travel, you will need to determine if you will bring formula or if you are able to purchase it at your destination. If traveling by air, you will need to determine what documentation the airline might need to bring the necessary supplies, such as your pump. The Oley Foundation has sample travel letters. See link here.

Talk with your CF care tam about the length of time you will be traveling as your child may be able to skip G-tube feeds on short trips or during a sleepover, if they can maintain their hydration and nutrition by mouth during that time.

When you are considering G-tube feeds for your child, consideration of cost is important. Not all health insurance will cover all aspects of tube feedings.

Things to consider include verifying if your child’s health insurance provides coverage for the G-tube surgery, the formula you anticipate your child will receive, as well as the on-going cost of supplies and the feeding pump.

If your health insurance does not cover these aspects of tube feeding, particularly the cost of formula, you may be required to pay for some or all of these costs out of pocket. Your care team can work with you to find resources or programs that may be able to offset these costs.

It is not guaranteed that your child’s daycare, preschool, or school staff will be able to deliver G-tube feedings during the school day. This is an important consideration for children receiving bolus feeds during the day.

Your CF care team can provide information or the documentation that your child’s school may need to help your child receive their tube feedings at school, including step-by-step instructions for feeding to share amongst their staff. Your team can help you advocate for your child’s nutritional needs and can serve as an on-going resource for your child’s school or daycare. Some families will keep a spare G-tube at school in case it needs to be quickly replaced.

Finding childcare, both family members or babysitters, that are comfortable with G-tube feedings can also be challenging for some families. This may require special training to help these caregivers feel comfortable and confident in providing your child’s G-tube feeds.