After a whole, wonderful, glorious five days out of the hospital, WE ARE BACK.
Not back to New York, but back to NJ children's.
G-tubes need to be changed every four to six months and usually you can do it at home and it takes like fifteen minutes. Unfortunately we are not so lucky as Maisie has been having problems with her stoma. She had a reaction to one of the antibiotics they put her on for HUS and it caused her skin to get swollen and rashy. Her stoma got so tight it popped the bubble that keeps it from falling out and the button fell out. And immediately the stoma started closing. After they took her off the antibiotics the reaction went down but the stoma remained almost closed. They sent us home with a new button and the high hope that the swelling would go down within the next couple of days. It did not. Poor Maisie was swollen, hungry, hurting, and losing weight every day. I called the doctors and we decided that the best thing to do is to have a surgeon at NJ children's drain and reshape her stoma and replace her button.
So here we are. They came in to take her about fifteen minutes ago, and until that point she was weepy and moaning and poking her belly and begging me to take her home. It broke my heart, but she'll be out of surgery soon and with a little luck we'll be home for dinner tonight.
