Monday 9/16/2013

Ava is just not herself today. I sat with her about an hour at noon and couldn't calm her. She finally got an extra dose of morphine and then she slept from 1:30 until about 6pm. But unlike last night-she is sleeping well tonight. Early this morning they decided to advance her NG to her small intestines..which is called an NJ. Instead they pulled the NG, and put a new tube down the other nostril. Her breast milk volume is the same but now it bypasses the stomach and goes directly into the small intestine. This way she has nothing to throw up. NJ feeds are also always continuous, so she is fed around the clock. Her multiple episodes of vomiting are looking like severe reflux. They doubled her prilosec dose. I think the plan was to keep the NJ for about a week and then try the NG again. They tell me this won't affect her surgery date for the G-tube, but we might not be able to use the G-tube until the reflux is under control, IF it is indeed reflux.  For severe reflux a Nissen is performed. This is where the stomach is kind of wrapped around the esophagus. I'm told that this is not ideal for TEF (transesophageal fistula) babies like Ava.   Ava is also off oxygen as of today. All of her other meds are being slowly weaned. Her morphine is weaned by 0.1mg about every 3 days. 

The boys had a session with child life today. They worked with the same child life girl that works with Ava. It was pretty cool. I wasn't there, but Sam got a little doll that he was able to draw scars on, put on a real ostomy bag on its stomach, and a real NG tube to go through a hole in its nose so that it was just like Ava...but its name is "Samuel." I think William needs his own session. He needs one on one attention. He is kind of struggling with behavior and focusing issues in school. They have only seen Ava once since being here. They are so ready to go home. They talk about it all the time. They miss their toys, their own beds (they sleep on little cots now), their friends, and their dogs.