Guest guest Posted March 3, 2007 Report Share Posted March 3, 2007 SOOOO WITH YOU ON THIS ONE! chrystine had that g-j, and my goodness... at 230 in the am, i checked her pump cause it was giving an error and found the whole thing lying there and a pool of milk beside her. that was the 2nd time it had just mysteriously came out. and, i don't care if it's gonna happen and we're supposed to expect it, its still freaks me out!!!!!! she has a g mic-key now, after wearing a cathether in her belly for almost 2 wks... good grief and god bless west virginia. i hope eva never has to go back with a feeding tube. its so awesome that she hasnt even needed it in so long! proud of that girl eva! she rocks! chrystal, mother to arleigh-4 chrystine-16 months CHaRGE+chronic kidney disease silas-5 months nate's loving (and opinionated) wife <BR><BR><BR>**************************************<BR> AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 Oh my gosh!!! Wow. What a night. The little I know tells me that it is a good thing and all should be fine. In our case, the stoma never healed and had to be sewn up. The fact that Eva's is already closed sounds like great news to me. Hugs to you both. wendy :-) Mom to Kendra, and Camille Mic-key Button Tonight Eva's Mic-key button fell out and it was in her clothes for a few hours I would guess because the hole was closed. I called the hospital ER at childrens and they paged the GI doctor on call. He called me back and we decided since they were talking about taking it out and by the time we get there and after waiting it would be to long and to late anyway so we are keeping it out. She has not used it in 8 months so we will see. He said the only downside is if she needs it again then it will be surgery again but by the time we waited and everything it would to late anyway and she would need it anyway. My guess is it fell out during her nap and my husband found it. He freaked at 1st and now that I talked to a doctor everyone is ok and we know she will be fine tonight. It has never fallen out before except at the hospital and the nurse was right there. So that was our night...LOL! Hugs, Crystal mom to (11), (3), and Eva (22 month old CHARGEr) wife to Dan in Illinois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 Sounds like a good thing i hope she continues to do well goes at the end of the month to see if he is going to have to get his back im hoping his last illness is gone and he starts packing on the pounds cause thats the only thing thats going to keep him from getting it back the doctor said not only is his weight issues from CHARGE but he also has his fathers high metabolism so im keeping my fingers crossed mommy to 18 month old CHARGEr > > Tonight Eva's Mic-key button fell out and it was in her clothes for a > few hours I would guess because the hole was closed. I called the > hospital ER at childrens and they paged the GI doctor on call. He > called me back and we decided since they were talking about taking it > out and by the time we get there and after waiting it would be to long > and to late anyway so we are keeping it out. She has not used it in 8 > months so we will see. > He said the only downside is if she needs it again then it will be > surgery again but by the time we waited and everything it would to > late anyway and she would need it anyway. My guess is it fell out > during her nap and my husband found it. He freaked at 1st and now that > I talked to a doctor everyone is ok and we know she will be fine > tonight. It has never fallen out before except at the hospital and the > nurse was right there. > So that was our night...LOL! > Hugs, > Crystal mom to (11), (3), and Eva (22 month old CHARGEr) > wife to Dan in Illinois > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 's friend with CHARGE in England had the same thing happen - and he has been tube free ever since - he's sixteen now! ) I am so pleased for you that the stoma closed well! Go, Eva! ) Yay! Yuka Mic-key Button Tonight Eva's Mic-key button fell out and it was in her clothes for a few hours I would guess because the hole was closed. I called the hospital ER at childrens and they paged the GI doctor on call. He called me back and we decided since they were talking about taking it out and by the time we get there and after waiting it would be to long and to late anyway so we are keeping it out. She has not used it in 8 months so we will see. He said the only downside is if she needs it again then it will be surgery again but by the time we waited and everything it would to late anyway and she would need it anyway. My guess is it fell out during her nap and my husband found it. He freaked at 1st and now that I talked to a doctor everyone is ok and we know she will be fine tonight. It has never fallen out before except at the hospital and the nurse was right there. So that was our night...LOL! Hugs, Crystal mom to (11), (3), and Eva (22 month old CHARGEr) wife to Dan in Illinois ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.446 / Virus Database: 268.18.6/709 - Release Date: 3/3/07 8:12 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 i know several people that have " gotten rid of their tubes that way " ! they fall out and since htey are no using them they keep it out, hopefully that is a sign that it isno longer necessary. congratulations! <BR><BR><BR>**************************************<BR> AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 great news cris only prob is soemtimes with mickeys well when i had one i remember there was a little insert and then the tube so hope the insert came out to if she had one if no one nos wat im on about its a ball thing and dotn no wat its called LOL > > 's friend with CHARGE in England had the same thing happen - and he > has been tube free ever since - he's sixteen now! ) > > I am so pleased for you that the stoma closed well! > > Go, Eva! ) > > Yay! > > Yuka > > Mic-key Button > > Tonight Eva's Mic-key button fell out and it was in her clothes for a > few hours I would guess because the hole was closed. I called the > hospital ER at childrens and they paged the GI doctor on call. He > called me back and we decided since they were talking about taking it > out and by the time we get there and after waiting it would be to long > and to late anyway so we are keeping it out. She has not used it in 8 > months so we will see. > He said the only downside is if she needs it again then it will be > surgery again but by the time we waited and everything it would to > late anyway and she would need it anyway. My guess is it fell out > during her nap and my husband found it. He freaked at 1st and now that > I talked to a doctor everyone is ok and we know she will be fine > tonight. It has never fallen out before except at the hospital and the > nurse was right there. > So that was our night...LOL! > Hugs, > Crystal mom to (11), (3), and Eva (22 month old CHARGEr) > wife to Dan in Illinois > > ---------------------------------------------------------- > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.446 / Virus Database: 268.18.6/709 - Release Date: 3/3/07 > 8:12 AM > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 Crystal- Even though it didn't happen as you expected, I guess congratulations are in order for being " button-free " ! I hope the coming months prove that the timing was right. Actually, it couldn't be any better than with spring approaching :-) Hugs- Michele W Quote Link to comment Share on other sites More sharing options...
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