My daughter had her mic-key button for over 3 and a half years. We hadn't used it in a long time and it was time to take it out. We took it out on Monday night and it's still leaking a lot of fluid from her stomach and still an obvious hole. I was told a while back by a nurse that it should close on it's own in a few hours when it's removed. Has anyone else been there done that and had this experience?
Of course now that it's out I'm finding stories on the internet of some kids needing it stitched closed. :-( Does anyone know how long it should take to heal on its own or when I'll know if she's one of those needing it sewn shut? Or experiences with having it surgically closed?
(We are not currently being followed by a GI doctor at this time. Her issues resolved 2 years ago and she has been progressing with oral eating since then. We were using her button for medications mostly until a couple of months ago when she started taking them by mouth. I really don't want to take her in unless necessary!)
My DS had a G/J tube or MicKey button for about 9 months. When his surgeon removed it, she said that it would likely close in a few days. His didn't. She tried putting something in the stoma (silver nitrate, I think?) to help it heal, but it never did. I think we waited about 2 months trying to get it to heal. In the meantime food and all his meds kept leaking out.
He needed general anethesia for the surgery to repair it, so that was hard because of the food restrictions. Also, he was allowed nothing by mouth for 24 hours after surgery which was rough too. He was on pain meds the first 2-3 days but it didn't seem very painful to him. I have to say that it left a NASTY scar. By far the worst one he has.
Let me know if there are any other specific questions I can answer. I hope that your dd's heals on its own quickly!
Thanks for the response, moongazer. Not the response I was hoping for, but I appreciate the honesty! I wish the medical community would have been more honest to us. I'll just add this to the long list of lies we've been told over the years. ugh!
My dad just sent me this:
good to know! my DD is still actively using her g-tube (she's had it for a year and a half) and i expect she'll need it for a few years to come. i hadn't really thought about how it would heal when it comes out for good.
sheesh, we spend all our time freaking out about the possibility of the g-tube coming out and not having a catheter or replacement tube to reinsert within like, 30 seconds! and turns out it's not actually going to close up immediately after all...
Sammysmammy- That's CRAZY!
Well today the stomach fluid stopped leaking out in large amounts.... but now she has blood coming out of the hole. I think that the stomach acid irritates her skin and is causing this. I'm thinking this is to our benefit though as a raw wound has a better chance of growing closed then if it wasn't being irritated. It's hurting her a lot and she cries big soggy tears! I feel so bad for her. I think it is going in the right direction though and I'm glad to not be changing her bandages and shirt every few hours!
I used to work for a pedi surgeon. I have seen sites that close in a hour, and sites that never close. They tell everyone to get the tubes in fast, becasue they do not want to have to do another surgery if your child is a fast closer (my DD is). That being said, our rule was, if you are still leaking after a week call the surgeon. We would always surgically close it after 1 month.
You can put some aquaphor on the skin around the stoma to protect it from leakage (just keep it away from the stoma itself.
Hi, I noticed from your letter that your childs mickey button site bleeds and causes her discomfort. My son also has this problem at times, but as long as he takes his losec medication and eats by the clock he doesn't have the problem as much. I find if he gets hungry the stomach acid is stronger and really burns when it leaks out. So I try and feed him often. Also if this happens I get him to lie down on the couch on his back which seems to relieve the pressure on the hole and put plenty of barrier cream around the site and put a dvd on to distract him until it comes right. Which it normally does 20 minutes after he has eaten something. He is on 10mg of losec twice a day, although I normally only give it to him half an hour before morning tea on an empty tummy and that is normally enough. Hope this helps.
thanks for your very informative site, my daughters peg has been out for 3 weeks slowing closing, but leaking lots and still a hole there. surgeon says come back after 2 months, i assumed it would also close quick. she had her peg for 11 years so maybe hers may take longer..its great its out but it is a worry wondering what happens next, anyways thanks for your information, i no longer feel alone