Jocelyn Paige Lee Foundation

First of all thank you so much to all of you who check in regularly and who are thinking and praying for our little girl. It means so much to us. As for the update….. Yesterday we went to Duke for the follow-up exam. And for a GI emptying study. The good news is they say she is doing well. And for us to keep doing what we are doing. The bad news is that they have discovered that she is refluxing. Which if you don’t already know that for Jocelyn could mean aspiration which could lead to pneumonia. She is holding her own now but they say with the reflux there the risk is there. The suggestions are surgery to place a nissen which basically will tie off or tighten, not sure, the esophagus. This in turn would prevent the reflux. The surgery would just be tough on her. Or we could use a J-tube which would be thread through her G tube, this would make it so she was fed directly to the intestines instead of the stomach eliminating reflux. This would also mean that she would have to be on continuous feeds. And the third option is to try medication. Which I suppose is what we are opting for first. The doctor is pretty confident that she will need the nissen though, eventually. We will see I guess. The other news that we got was that the chest x-ray is still showing the atelectisis. we are for some reason unable to get rid of this. The disappointing part of this is that When we were in ICU two weeks ago they did 4 different x-rays all showing improvement if any of the atelectisis. The only difference is that they did them laying down in the PICU. Apparently they may be the reason they can’t see it? But on a positive note….. Jocelyn is in good spirits. She seems to be feeling much better.