My daughter is 29 months and has a gtube, which she had placed at 7 months old. I just wanted to offer some advice to the nurses to pass on to patients. I belong to a board where there are many kids with tubes and the advice is always the same from the parents, and it's different than what I get from the GI nurse at her doctor's office. This is NOT to be taken as medical advice, but just knowledge based on my experience and those of parents I know. We live with the tubes every day and know what we are talking about.
For bad granulation tissue, the silver nitrate does nothing. It will temporarily burn it off and then it grows back within days or even hours. The area becomes very irritated and that causes it to grow back. The tri-(something-- can never remember how it's spelled) steriod cream works way better. For irritated skin from stomach acid, aloe vera gel works very well.
Also-- and this is the most important-- have the stoma open to air
. Do not put gauze on it or any kind of barrier cream, because this will make the gran tissue way worse. Yes it will leak, yes the gran tissue will break open and bleed. Have faith, if you leave it open to the air for a couple of weeks and apply the cream as needed, it will become a perfect or nearly perfect stoma. I cannot tell you how many parents I have met in public who talk about gran tissue and they were told to keep gauze on it.
Also, for a leaky button, often the child does not need a bigger french size. They just need it to be stabilized for awhile. When my daughter starts to fiddle with her button too much the stoma gets stretched out and starts to leak formula. The first time it did this the doctor put a bigger button in. Then within a couple of weeks it was leaking again. I found a way to tape it and stabilize it so it was not rocking back and forth and I dressed her so she could not play with it (i.e. onesies) and within a week the stoma had grown smaller and was no longer leaking. Now whe she plays with it I tell her I'll have to get out the tape and she stops.
My daughter gets compliments on her stoma every time we go to the doctor. One GI nurse said it was best one she'd ever seen.
I have taken some before and after photos of my daughter's stoma just to prove my point. (scroll to the bottom of the page)
Her main reflux/tube site is www.reflux.darshani.com
with her story and other things (pump tricks, tube-weaning, etc).
Thanks for listening.