re herniation in 23 year old right side CDH survivor

[Jayne]

Please help.
My daughter was born with a right side CDH. she is 23 and has had minor health challenges but basically been healthy. My struggle is that when we speak to Dr.'s about her history they seem to be very "casual" about it. So I am concerned that I am over reacting. She was in emergency a few days ago with extreme vomiting and a temp of 102.9. They did a partial CT scan and reported her colon is in her lung cavity. Sent her home with advise to visit a certain surgeon. We did visit that surgeon yesterday who informed us he is not the one we need to see. Also informing us he hears a heart murmur and the vomiting has nothing to do with the re herniation. We have an appointment today with her GP hoping to get some clear guidance on if we should wait the 2 weeks for the appointment with the next surgeon or if we should call U of M Ann Arbor (we live in Michigan).
I don't want to offend the Dr's who have treated her but I feel it is imperative that she be seen ASAP. Looking for other parents who have possibly experienced something similar so I can gauge if I am over reacting or if I am spot on

[AprilS]

I would be terrified if I were you. How are things with your daughter now? I have a 21 year old right-sided survivor. She has also had some health issues, but she has been fairly healthy until this summer. We found out in July that she was very anemic. Since then, she has been on mega doses of iron. We have brought her numbers back up, but if she reduces the iron, her iron stores begin to fall. I am concerned that she is bleeding somewhere in her GI tract. We know that she has had a loop of bowel that sometimes migrates up on chest xrays, but when she was little, her surgeon always told us not to try to fix anything that isn't broken. In other words, if her body is functioning, leave it alone. We have heeded that advice, but I am concerned now. We found a GI doctor, and he did a scope down into her stomach and a bit of small intestine. He found a hiatal hernia. He just seems to be so dismissive of her history and talks about "normal" 20 year olds. It drives me crazy! We haven't been normal since day 1. His advice is to just let her take iron, but I would like to find the source of the problem. He suggests a colonoscopy, but I am afraid that the air pressure from that could be too much on her diaphragm and cause her to really reherniate. I wish so much that we had doctors who took an interest in our children as they age out of pediatrics. I am afraid as they grow older, these unique problems will continue, and we just don't seem to have any doctors who care enough to really listen, consider the options, and help find solutions.