So, after hours and hours of research and making new appointments... I'm worn out even more. Even though we have this appt on the 21st I continue to research to see if there is something I missed or if there is more information out there.
I spoke with Zack's Dad last night. It was comforting to know that this compression wrap has worked for their son. And, that he was able to have a successful surgery without using mesh or gortex to pull the muscles together on top of the intestines. He was also going to see if he could find the name of the Occupational Therapist that created Zack's compression foam pad/wrap.
I spoke with nurse Stacy today (St. Louis) and asked that she has Occupational Therapy prepared before we come. She said it was on her list to talk to them and show them Zack's website. That way they can speak with the OT person in Seattle and find out what kind of materials they used to do that. I asked that all of that be on hand so we won't have to go back for another appointment for that. Dr. Warren (the surgeon we will see in St. Louis) will also speak with Dr. Ledbetter (Seattle) about the different types of compression wraps that they do.
AR Children's called me today to let me know they had the paperwork together to send to our Insurance. I asked the nurse again if they would consider at least trying this. She said that she talked to the Dr. and he simply said that it's not in their course of treatment for these types of babies. Which got me wondering and therefore I made ANOTHER phone call. This time to Blair's 1st surgeon (who moved to Indiana right after she was born). I asked him what he would do given this type of situation and he was all for it. He said it definately wouldn't hurt and it might improve therefore making surgery easier on her! THANK THE LORD that this man would be willing to try it... but darn it if he didn't move on us! He named Dr. Warren (St. Louis) and said that he was a wonderful surgeon and has a lot of faith that he will do the right thing!
I know we are getting somewhere with this... FINALLY! I just can't wait to see the results months from now... take lots of pictures and document everything so maybe I can send that to AR Children's and maybe they would start doing this for other Large/Giant Omphalocele babies. I guess you can say that I'm a Mom on a mission and I will never give up on my child! And, if this happens to save the life of another baby then that's even better!
Hugs - Tiffany