Has this ever happened to anyone?

Since yesterday, we thought he had gas because he kept smelling like poop. Long story short, we discovered it was MOLD growing in the g-tube!!!!! (he has a PEG). I have no idea how mold could grow since he's on a continuous drip....I'm waiting for the GI to call me back. SOOOOO disgusting! Thank goodness he's on antiobiotics due to an ear infection, or who knows what kind of issues that would cause.......

Wow! Thankfully that's never happened to us, how scary!

How often is it changed? How often do you flush it? Is he on 24 hour a day feeds?

That's a new one for me, too. Let us know what the GI says!

It's changed about every 3 months. He's on a continuous drip 21 hours a day. Off for 1-1/2 between 6:00 & 7:30 morning and night. We hadn't been flushing b/c he was on 23 hours a day until recently, and somehow got out of the habit of flushing every time we turned him off. So, that's the only thing we can think caused the mold....the 1-1/2 he's off each a.m. & p.m. He just switched to 21 hours last week and that's the only thing that has changed. We have to go in to see the GI at 1:30. If he doesn't report us to DCF (dept. of children and families) for being bad-non-flushing-parents, I'll let you know what he says. ;)

LMBO! I'm sure they'll let it slide just this once...LOL! Actually, Shae is on for 20 hours a day and I've frequently forgotten to flush it, if we're out and about or for whatever reason. Maybe it's different b/c it's not a button, the PEG tubes are thicker than button extension tubes. When is he getting a button by the way, are they talking about it?

He had a button, but due to his retching, we found the PEG easier, so we switched back when this button fell out a month ago. He hasn't been retching (fingers crossed that it stays that way) so we may go back to the button now. Every time we change his PEG/button, he has issues like starting to retch again. The GI says it shouldn't bother him, but he's "a sensitive kid."

On an aside, our button extensions would get hard (less pliable) after using for a few days. Does that happen to you? That is one of the reasons we wanted to switch back to the PEG.

Shae always has a few bad days after anything is switched too. When she went from the catheter to the button, she was sick for about a week or more. Then when the buttons get changed she's always bad for a few days.

Our extension tubes start to get stiff after about two weeks, and by the time the month is up and it's time to change it, they are really stiff. What formula is he on?

He's on Neocate. 24 cal. His rate is 45 ml/hr during the day and 50 ml/hr at night.

We just got back from the GI. He said it was the not flushing that probably caused the mold, but that it wasn't enough of a problem to change his g-tube out. He said to flush it a few more times with seltzer and the smell should go completely away. It didn't even smell that bad to him. Granted, I had cleaned it with a pipe cleaner & flushed it with seltzer a bunch this morning. I'm going to become flushing-obsessed now.

I take it he didn't call child protection on you??? ;-)
It's amazing to think that mould would grow so quickly! :shock:
Awwww, your babes are gorgeous... any updated piccies??? I always think of you (as a fellow twim mummy) and wonder how you're getting on. Hard to believe they will be a year old soon!!!!

No, thank goodness he didn't call DCF on us. We joked about it though. I think the fact that we live in South Florida helped the mold grow...it was 88 degrees here today, and going in and out betweeen heat and air conditioning probably spawned the mold.

I do have updated pictures, but am computer inept at getting them on here and I hate to bother Becky. I will attempt to figure it out again and put some new ones on. If I can't figure it out, I'll email you...that I know how to do.

Your guys are so cute. Getting really big!

That would be awesome.. I'd love to see their new piccies!!! I'm not techno either :oops: so I empathise!!!