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Old 10-14-2012, 10:26 AM   #14
jessicap
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Join Date: Dec 2006
Posts: 1,706
Re: Imperforated anus and vesicostomy?

WOW! Thanks so much for the support ladies! My computer broke, so I have not been able to check back to this thread for a long time. I so appreciate your support and advice.

So far life has been good. We had MASSIVE issues with her ostomy bags, I was going through 9 or more bags a day. It was ridiculous and frustrating and I was pretty sure I was not up to the task.

I met with some ostomy nurses in the area we live in, but as hard as they tried, they just couldn't help me and Shelby out. It was so frustrating, finally we went back to the children's hospital that her surgeries have been at and where her surgeons are located at, it is 3 hours south of me. And the ostomy nurse there is FABULOUS! ABSOLUTELY FABULOUS! and she fixed that problem for us. When I had asked back home here about a belt for her, I was told they don't make them small enough, but then down at the Childrens' Hospital, the nurse there told me that she uses Trach Ties for a belt for babes, and it fixed everything! It was a God send for sure!

We have since had a spine MRI and a Pelvic MRI, that went well. She is looking like a great canidate to have everything put back to where it needs to be and for anaplasty. She has everything she is supposed to have other than the anus I guess and so they are expecting her to respond well to the surgery.

Thank you again!!!
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