Instructions about care of g-tubes was woefully short 9+ years ago when Little Miss got her first one. Doctors, nurses, surgeons, hospitals all fell short in helping us know how to best manage a g-tube. I have learned many things:
1. Keep it dry as much as possible. Even let the sun get to it once it is healed. At night when sleeping, uncover the area to allow air to circulate. One of our biggest problems emanated from too much moisture seeping out and onto the skin.
2. Once the site is healed, bandages and ointments are not usually needed. A “flat”/low profile button is easier to manage than one with a tube protruding. If ointment is prescribed for hypertrophic tissue, etc. be SURE to get it only on the designated area. (Yes I have a story about this. Maybe another time.)
3. If anything looks strange, have your doctor LOOK AT IT. (Yes I have a story about this also. Maybe another time.) All the verbal description you can manage doesn’t compare to having it eye-balled by a doc.
4. Check the balloon volume every 4 – 6 weeks. How does the volume reduce? I don’t know. But it does. If it has reduce significantly there must be a leak and it is time to replace the button. Little Miss’s balloon has 4 cc or ml of water in it usually. This is enough to keep the whole thing from popping out, without taking up too much space in her tummy.
5. Insist with your insurance company that you need at least two spare buttons on hand. We had only one spare years ago and when we had to change the button and the new one leaked we were up a creek. Currently, we have two at home and one at school. Just in case.
6. Keep an old button and glue it to the tummy of a doll. You can even punch a hole in with a nail or any of multiple tools and render a doll g-tube fed. This was helpful to our daughter although she doesn’t care about it now, at nearly age 11. Kids always like knowing they are not the ONLY ones!
7. Remember that the inside of our stomachs are not sterile! (meaning germ-free) We put food and water and stuff in there all the time and while we try to keep germs out, they certainly get in there. Your g-tuber can bathe and do all those other normal activities without concern as long as the site is well-healed and the button is closed.
8. About those closed buttons – In the type of g-tube Little Miss has, a Mic-Key, there is a valve that closes so the stomach contents do not leak out. This is true whether I close the g-tube or not. I’m not really sure why g-tubes are made with a closing device since it isn’t really necessary. Probably just to make us parents feel better.
more pointers to come…. stay tuned. If you have any questions, just drop me a comment or email!