Other than the day-to-day litany of tests being conducted on Ethan, we think we may have found the issue! Like everything we have gone through, there is good and bad news in the discovery. . . .
The doctors just came in to talk with Robin, and the results of the bronchoscopy are back. It turns out that Ethan has a significant amount of fluid and lipids in his lungs, which very likely means that he is reflux aspirating his food. What this immediately means is this:
1. He is to stop tube feeding immediately and go back on IV's for all nutrition and hydration;
2. He will still be undergoing the Gastric Swallow Test tomorrow in Nuclear Medicine to see how he absorbs food and where it goes;
3. He will be getting a "weighted tube" inserted directly into his intestine for food, hopefully bypassing the stomach and avoiding the aspiration; and
4. We will go from there. We don't know how to correct this problem, as the doctors were cautious to say anything to us without conferring and having GI and the pulmonologist get back to us after the test tomorrow morning. In discussions several days ago, we heard that surgery could be involved if this was the issue.
Ethan will not go home with a weighted tube, so it is likely that our long stay is being extended further.
We really ask for prayer right now that the solution to this problem will be the easiest to fix, whatever that might be, and that God's hand will be upon Ethan and our whole family as we address this issue in the days to come. This is a bizarre feeling I've never had before in my life where on one hand I'm relieved to know what the problem is and on the other hand scared for Ethan and possible surgeries, etc.
Thank you all for your support as always -- it looks like we're finally finding something specific that we can put our heads, hands, hearts, and prayers around. Thank you also for remaining so consistently faithful -- everyone has continued their support throughout this long and trying ordeal, and the continued help and love has meant so much.