For many children with HI, having a gastrostomy tube means having a lifeline. Whether the tube is used for occasional boluses of dextrose when a blood sugar is low or for continuous administration of dextrose water overnight, the easy access it provides is essential. But the gastrostomy tube (GT) is not without its challenges. From securing it early on when a baby with HI begins to roll over in his crib, to finding a backpack for carrying the pump around when the child is older, each developmental stage can bring a new challenge. Here are a few pointers and reminders for those with a GT:
- Even if you live far away from CHOP, it is a good idea to be seen intermittently by a pediatric surgeon and his or her team. They can help with tube sizing, tube removal and tube replacement, if it ever comes out. Your pediatrician can recommend a local pediatric surgeon if you do not already have one.
- Skin care is easy. The stoma (opening) site and surrounding area only need to be washed with mild soap and water. Anything more than this can cause skin breakdown. Some yellow-brown drainage at the site is normal. Please contact your surgical care provider to check out any leakage at the site.
- Some granulation tissue may develop at the site. It is typically dark pink or red, and it is the body’s natural response to the tube. If your child has a lot of this tissue, there can be leakage and skin irritation. Please contact your surgical care team for treatment of painful granulation tissue.
- Do you remember what to do if the GT comes out? No matter how long the GT has been in place, the opening can close very quickly. If you have a Foley catheter (and you should), place the end of it into the stoma about 1 to 2 inches and tape in place. Then call your child’s doctor right away.
- Always remember that your child’s tube does not need to affect normal activities. Your child can bathe, play, swim and sleep; it just might require some creativity!