So if you've been following along you know that Chloe's G-tube fell out on Friday causing us to go to the Emergency Department because I didn't know when it fell out and if it's been out too long a surgeon might have to put it back in (a G-tube is a small little tube that goes into Chloe's stomach so that we can put liquid directly into her stomach. This was necessary when Chloe was considered "failure to thrive" and was too weak to eat enough to sustain herself. She's had it for a year and a half). It's fallen out before and I've been able to put it back in, but since I had no idea how long it had been out surgery asked that we come in to have a surgeon look at it. So we loaded up and drove to the hospital and they decided WITHOUT looking at it to leave the g-tube out because she hadn't used it in 2 1/2 months!!! (Don't get me started on THAT whole process, considering a surgeon never came down and even looked at it, meaning we drove in there and have to pay a $150 copay for something they could have decided over the phone! ARGH.) Anyhow, we DID get scheduled to see Chloe's surgeon on Monday (for another $40 co-pay - couldn't they have coordinated that better????) to make a plan for closure of the g-tube site.
Apparently, about 90% of the sites will close on their own within a week. For those that don't close a surgical procedure is required. The GREAT news is that the surgeon is pretty confident that it will close on it's own because it has already closed a significant amount. The only downside is that she has some extra tissue that grew around the site that won't be removed now so Chloe will be left with not only a scar, but a little lump of skin on her belly. I'm sure she'll HATE it when she gets older, but I guess we'll just have to address that with a plastic surgeon if and when she gets older and it becomes and issue (not "if and when" she gets older, but "if and when" it becomes an issue!!! LOL). But obviously the key is that she won't need a surgery! Whooo hoooo!
The other issue that the surgeon briefly addressed with me was the use of Reglan. She really felt that it was a nasty drug and not worth being on anymore since Chloe's not even taking an antacid anymore. We discussed the potential for serious and permanent side-effects. It just sounds to me like it's time to get off that stuff. (She takes it for stomach emptying problems, but I think that she's probably grown out of that. Seems to make sense to me that we at least try her off of it!!!!) I've heard a lot of parents won't even let their kids go on it, so I feel a little guilty for having her on it for so long without knowing more about it, but not much I can do about it now other then get her off of it.
Chloe has seemed a little 'tired' lately. She's not necessarily sleeping more, just seems a little droopy. Her therapists and friends have also recognized this in her. I think it'll be good to eliminate one drug (then she'll just be left with her heart med and her thyroid med) and then we can evaluate what might be causing that.
Finally a little bit of a funny story - when we were in the ED for her g-tube they wanted to make sure everything was "working" okay - in other words, she could drink something without getting sick. So I gave her some juice and before you know it, it was leaking out of her g-tube hole!!! So there I was giving her juice and it was like a cartoon when the character gets shot and then they drink something and the liquid comes out the hole!!!! I know, kinda gross, but you have to admit, at least a little funny! LOL