A lot has transpired throughout the course of the day which has made it difficult for me to post any updates. Surgery came back again this morning and took a look at her tube site. They verified that it must be in her stomach because when they opened her port it leaked stomach bile. What we were unsure about was whether or not the tube was pulled partially out of the stomach. In order to determine this a dye study needed to be performed. This study is done by injecting barium through her tube and then scanning her belly to get a better picture of the inside workings of the tube. We had the dye study done at 3:00 pm, and good news everything looked like it was where it should be. Now here’s the problem, her tube site is obviously very sore, oozing “yucky” stuff, and has tissue growing out of it, disgusting I know. One of surgeons came by and took a look at her site and agreed that she could have pulled her tube just tight enough that it is causing her pain and discomfort. He loosened the T-bar that holds the tube to her skin being careful not to loosen it too much for fear that it could leak food. There are several theories behind the tissue that is coming out of the stoma one is that it could have been pushed out by just the slightest tightening of the tube, or two it could be that perhaps the tissue is a very very red granulation tissue. In any case, all of the scenarios mentioned have ruled out the need to replace her tube, hip hip hooray!!!
We are relieved that it appears that there is nothing inherently wrong with her tube, but regardless something doesn’t seem right with our girl. Lucy has just not been acting like her normal self. All who have seen her agree that she is not looking or acting like the little Lucy we know and love so much. We are waiting on cultures to see if she has an infection of some sort. The plan for now is to start her back on her feeds tonight and see how she handles it. They want to monitor her over night to see how she is doing in the morning. Our hope is to be back home sometime tomorrow, because you know there is just no place like home!