Not the News We Were Hoping For

Sorry for the delay in updating -- like expected, we spent a while in recovery and when we finally got to our room we were very busy with Ben. He is doing fine, just not feeling so great. The doctors (ENT & GI) were a little disappointed with what they saw during surgery. I'll try to do my best relaying the news.
GI-
They took a scope of his stomach and intestines, placed a PH probe, and did some biopsies. They found a problem area in the bottom of his stomach that hasn't been seen before. More than likely, it isn't a new problem... just not something they were able to notice before because it is very difficult to see. Ben has a web of extra skin where his stomach empties. His stomach does empty, but probably not the way it should. A regular barium emptying study (which is what we have had done before to test this) wouldn't necessarily show us what we need to know. We are going to have a different kind of xray test done to find out more. Based on those results, they will decide what needs to be done. More than likely, Ben is going to have to have a GI surgery to correct this. Also, GI wasn't able to place his PH probe in his nose. It is now in his mouth which is VERY rare and uncomfortable. They had arm restraints on Ben after surgery so he wouldn't pull out the probe. We took those off right away because it was just too upsetting to Ben. We were better off just trying to keep a close eye on his hands. He is doing much better with it this morning than we expected. We are suppose to hit a button and log every time he either gags (which was pretty frequently considering the tube is in his mouth), vomits or coughs. Needless to say, we are counting down the hours until that can come out!
ENT-
Ben's nose is once again COMPLETELY closed with bone and tissue. This is so disappointing! Ben has had so many awful surgeries to open his nose and only to find out that it is closed right up and he is going to have to go through this again. For the time being, ENT is leaving his nose alone until we can figure out these GI issues (this is why Ben's PH probe couldn't go down his nose). They also looked at his airway and it was a mess. His upper airway is much, much worse than before. Something is destroying his airway (they are suspecting it has to do with silent reflux, his stomach not emptying properly and his failure to swallow his own secretions or anything else). Hopefully the drool procedure will help some (too soon to tell if it is working). We have also been instructed to do absolutely NO oral feeds. Because of Ben's uncoordinated swallowing, this is only making his airway worse. And finding out what is going on with GI will hopefully help. They want to put Ben under general anesthesia every three months to follow the progress of his airway. His ears were also in pretty bad shape. We are going to have to see ENT every 3 weeks and have his ears cleaned out. This is very important to stay on top of or his cochlear implant could become infected. At least this doesn't have to be done under anesthesia.

With all this being said, Ben's trach is likely going to be in for a while and he will have some additional surgeries in the near future. As always, we take one step forward and 10 steps back. Just doesn't seem right that Ben has so much to deal with -- so many things wrong. But at the same time, I'm just so amazed with him that he is doing so well in spite of all he has wrong.