Practical advice from parents

To keep tubing from getting wrapped around an active child:

• Tuck the tubing under clothes. Use a onsie t-shirt or other belly band.
• Run tubing through clothes and out the leg. It’s harder for the child to reach, and the tubing moves with the child.

Feeding

• “As a nurse, I always warned new G-tube parents that stomach contents might come out the tube, especially during bolus feedings.”
• Be prepared. If you are feeding or venting with a syringe or if your child is crying or coughing, tummy juice and formula will come back up into the syringe. The juices may look curdled. Don’t worry – just calm your child and refeed. It can be challenging if your child won’t calm down. The curdled formula is normal – it does not mean that anything is wrong.
• There are many different ways and schedules for feeding your child. It can be hard to work around your child’s feeding plan. This is especially true when other children need to be taken to and from school or when you need to go to a doctor’s appointment. It is okay to postpone the feeding for a short time – or adjust the feeding plan for the day.
• If the feeding schedule doesn’t seem to be working, contact your child’s nurse or dietician. They may be able to help you adjust the feeding plan.
• If your baby is allowed to eat by mouth in addition to using a G-tube, normally it’s okay to feed your child when they seem to be hungry. You may not have to wait for the “scheduled time.”
  
  “I found a device that makes it easier to open formula cans. It was in the soup aisle, and is intended for opening cans that have pull-tabs. I tried it and it worked like a charm. No more sore thumbs!”

Feeding pumps

• “For myself as a ‘tube-feeder,’ I love the small pump. Since I am on continuous feeds, the pump’s small size is ideal for me. I can go about my day while I eat.”
• For kids who need feeding pumps, there are several different kinds. Many times, you will get the pump that your equipment company uses the most. If you have problems with it, like lots of beeping, call the home care or clinic nurse for help. Check with your insurance company — you may not have to stay with the same brand of pump or even the same home care supply company.

A tip for cleaning the extension set:

• After rinsing, run the closed clamp up and down the tube. You can also roll the tube between your fingers to loosen the formula stuck in the tube.
• Your home care company may have a long, thin brush that you can order to help with cleaning the tube.

Changing the G-tube

If your child has already had their first tube change at the clinic, you can carry an emergency kit. The emergency kit will come in handy if your child’s tube or button accidentally comes out when you are not home. It should have a spare button or tube, sterile water, a syringe for the balloon and some lubricating gel. Keep an extra, empty syringe, some gauze and hand sanitizer in your kit.

General advice

Use a baby monitor to listen for your child.

Relax, and don’t give up. Ask other parents.
Join social media groups, or follow parent blogs for children who have G-tubes.