Maggie was able to have her Botox in her neck and stomach yesterday. We are so thankful to have that done!. Thank you for praying.
Maggie has not gained weight in three months so if this doesn't help her gain we will have to try other things and try them soon. We had a long talk with the GI doctor expressing how frustrated we are with the constant vomiting and how even more frustrated we are that it's the g-button that is causing the vomiting. We reminded him that we "gave in" the g-button to make our lives easier, and instead it's made our lives a living nightmare. Our child gags and vomits everything we put in her; her eyes water and her face turns red and she can't breathe well. These episodes go on for 5-6 minutes and it ends with everything within two feet of her covered in vomit. Her mouth must taste horrible, but she refuses to drink anything because she is so scared. (I try to brush her teeth but it's hard to jam a toothbrush in the mouth of a baby who has an oral aversion and gags whenever anything enters her mouth!)
Anyway, the doctor said that even if we took the button out and surgically placed another one somewhere else in her stomach, the vomiting would probably not get better. The reason is because the anatomy of her stomach was forever changed by the initital surgery. The only thing that may help, he said, is a permanent surgical procedure called a Nissen that we have avoided all along because it can cause even more gagging and wretching. But as he said, if she's not gaining weight we have to do something.
This was very discouraging to hear. Basically one surgeon and one surgery has forever changed my daughter and we don't know what her future will look like as far as vomiting and eating. She could vomit and gag for many more years - or the rest of her life - and never be able to eat. We just don't know. I told one friend I am angry and sad at the same time. Maybe if I had spoken up for my daughter in the beginning when I felt like something wasn't right with the button, maybe, just maybe, we'd be in a different situation.
I am not giving up hope just yet. We'd like to get another opinion on the matter. And I am still praying for dramatic change in her vomiting (and neck!). We got our e-stim machine so we will be working on that, too.