Guest guest Posted April 6, 2006 Report Posted April 6, 2006 Venting, blood from button sounds like my life. Cassandra has had every possible downside to the fundo and button. So much so that after ten months of hospitalization and 15 rounds of theatre,for major surgeries, we almost lost her when her button went in. It was leaking so badly, that no nutrients was in her body, her body started to shut down, they had to bring a warming trolley from neonatal to infants to keep her body going. Finally an ICU Dr. came and put a line in her scalp , not that it is the chosen way to give I.V. but her veings collapsed. It was terrible. Eventually the leaking stopped, with time to heal. Then no one told us , even living in the hospital why she cried when being fed and screamed after, with dark discharge coming out of her stomach. Finally venting was suggested which stopped that. Sowe vented before each feed and if she looked bloated or with all of our retching problems. She has bled from the sight and her stomach twice, both had been indication of trauma, having bumped the sight, her favorite trick going down slides on her stomach. Now we have been told not to vent regularly because we are not allowing her stomach to expand in size. At four years of age, Cassandra can only tolerate 150mls. We do give her water during the day not just to flush because after we recovered from the initial leakage, we then encountered a terrible episode of bowel blockage, can happen with fundos and buttons. We are now cautious with bowel movements, and when her tummy is distended, I give her yakult, it cleans her system out. Gut health is perimount, as it also effects SLEEP, BEHAVIOR, and SECRETIOns, all of our other favorite joys. Best of luck,Marie mommy to 4year old Cassandra CHARgEr West OZ Re: VENTING!!! what is it? why has no one told me!!!!! You are not alone. I did not find the doctors very helpful in explaining how to do this or demonstrating it. We learned more about how and when to vent from another parent in our Parent-2-Parent group! When we had asked our pediatrician (who is very competent) about how you knew when to do it--he just said " we would know " based on how Evan was looking and acting! Hello...it's not that intuitive at first! (mom to Evan 8.5 mos) Lesley Chan wrote: Hi all I have seen this word on the listserv and associated it with annoyed or venting your views, which where i come from that is how this word is used. so never paid attention to this word.....ooooppps however, today we went to radiology to have a new gj tube fitted as the last one was the wrong size and she also has billious fluid coming from her stoma hole in her stomach ( mickey button in stomach and on xray is passed to the jejunum as a temp measure for the reflux) today i said she is retching a lot and needs to bring stuff up usually frothy mucous , and the radiographer said you can vent her there is a different type of mic-key button, with two ports, and i should draw back some of the stomach juices to ease with build up etc.... I didnt have a clue i could do this...although i cant with the button i have its not got the two ports, but i asked could this be mentioned at the meeting i am waiting for....she should have one if it will help her. so hopefully they will order one after the group meeting. question.......why if it would help has none of the doctors etc told me about it or fitted it before now given all her reflux and chronic lung disease through the aspirations and frequent pneumonias!!! i sometimes feel frustrated that if i dont search things out they dont get mentioned.... DOES ANY ONE VENT THEIR CHILDREN DOES IT HELP HOW DO YOU KNOW HOW MUCH TO TAKE OUT THANKS LES xx CHARGE SYNDROME LISTSERV PHOTO PAGE: http://www.imagestation.com/album/?id=2117043995 Membership of this email support group does not constitute membership in the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote
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