While I've been watching Blair's Omphalocele getting bigger in the past few months. I have to ask why I think this is happening. This is a pic taken on May 22nd (right before she came home). The skin still had quite a bit left to grow up and over the Omphalocele. And, her O at this point was about the size of a small orange.
This picture was taken on June 18th. You can see the O only has about a quarter-size left of skin to grow. The intestines were pushed back inside and her belly was almost flat! We were doing wraps at night and she also slept on her stomach because she was on a monitor.
It seems now that the skin has finshed growing the intestines have pushed back out and now it's the size of a baseball again. I called and talked to the nurse in the Pediatric Surgery Clinic at AR Children's and suggested that maybe we need to do a compression wrap on her. She said that they don't do compression wraps. I have been doing a LOT of research the past couple of days and have found the Seattle Children's does do compression wraps. They have had a lot of success from it. One little boy that I have found on the internet had the same size O when he was born. They started doing Silvadine treatments as well as compression wraps and his belly was flat at 7 months. That's when they did the surgery to completely repair his abdomen so the intestines wouldn't push back out again (kind of like they have with Blair).
I just took this picture today! You can see how big it is. In person it's the size of a baseball. I'm confused on why AR Children's doesn't want to try this approach. It's been proven to work obviously! I don't want to get a year down the road and they try to do surgery and something bad happening because her lungs can't take it. If they pushed everything back in right now it would put MAJOR stress on her lungs and she could possibly die. I just don't want to take that chance and want to get THE BEST care for my child. Not saying that AR Children's isn't ONE of the best... just maybe not the best in this area.
So, I have called and left a message for the nurses in the surgery office at Seattle Children's. I'm also trying to get a hold of this Mom of the boy I told you about. I will let you know how it goes!
Hugs - Tiffany
2 comments:
I was wondering if it was getting bigger from the pictures you posted the other day from the pumpkin patch. I thought it was more noticable through her clothes than it had been before. It's definitely interesting. Did you check anything with the Mayo clinic? I hope you get something figured out because I can only imagine that it's something that you have on your mind all the time.
Seattle Children's is phenomenal. Whatever it takes to get Blair's little tummy right is what you've got to do. Keep pushing until you get an answer, and never, ever hesitate to get a second answer if you don't like the first one. They might be the "experts" but YOU are the mom!
Post a Comment