Addy did well, although it was a very LONG night here at home with those wires down her nose and attached to her stomach on the outside too. Those wires were connected to a monitor. Each time Addy woke up, fell asleep, was eating, stopped eating, coughed, gagged, or vomited we had to push a button and make a notation in a journal. The wires were not very long, so we couldn't let her walk around and play without being right by her side moving that monitor. Her arms were in braces to keep her from bending her elbows so she couldn't pull the tube out. It was stressful for her and she hated all that tape stuck to her face. We went back today and had the wires taken out. We will have results in 3 weeks.
Remember when she went in for the Upper GI and the Small Bowel Follow Through? It was near the end of September. They refused to do the Upper GI since she doesn't take liquid by mouth. I requested that they call the GI specialist that wrote the orders for the test to be done, as I was sure he wouldn't have written for it if it couldn't be done. I had read about other G-tube kids having the test done, but the doctor conducting the test assured me that there was nothing they could do and they wouldn't do the test. I spoke with her GI doctor yesterday (as he was the one conducting the Endoscopy and such) and informed him of the issue with the Upper GI. He was very upset and said that it should have been done. He said they could do it with an NG tube (feeding tube through her nose, just as we used to feed her). Of course, we now have to go back and have that test done. It is infuriating because it means another trip to the hospital... especially now that cold/flu/RSV season is upon us. It means another day off of work. It means more copays. It means more parking fees.... the list goes on and on. I'm very upset that Addy has to go through all that again. Anyone know of a way for me to "nicely" get that taken care of? I want them to know we aren't happy, I just don't know the right person to go to.