Johns Hopkins January 10, 2012
Carter loves looking out our hotel window! :)
Carter had two appointments today. First we saw his urologist and he re-informed us that Carter has to be thriving, steadily gaining weight and properly receiving nutrition before he qualifies to have his "big" surgery. We already knew this although, he did inform us that May would be an unrealistic date to set. We met with the GI team next. They spent a lot of time with us and really examined every aspect of Carter's GI system. After reviewing all of Carter's symptoms and all of the test he has already had they came up with two things it could be. The first could be extremely severe reflux. The second could be that Carter stomach is not working. Our Doctor is leaning more towards his stomach not working, although your stomach does not just stop working. Something would have had to alter it and Carter has not had anything done to his stomach. So that is why we have to rule out severe reflux. Although all of the tests thus far have shown that Carter is not refluxing, he will need further testing to make sure. Our Doctor is going to work on getting everything together tomorrow for the next step. Carter is going to have a N-J tube placed. This is a tube very similar to what he has now in his nose, although it goes down into his intestines and bypasses the stomach. We will be almost certain that Carter's stomach is not working if he tolerates the feedings going through the N-J tube. Carter will also have a biopsy done of his stomach and our Doctor will look into his stomach just to make sure everything looks ok. We expect for these test to be done on Thursday or Friday. Although, this is not the news we were expecting to hear we are happy to finally be getting to the bottom of all of this. Please continue to pray for Carter. We hope to have answers by the end of the week.