Hurry up and wait.

We had a follow up yesterday with Dr Hill, which is Zach's primary GI dr. It has been a while since he has seen him, we have been seeing the other dr's on call and such. First off, he knew very little about all the changes that have taken place with his meds and symptoms. So, that was the start...getting all the meds straight in the computer, yes it has been confusing, he has been on several different meds over the past month with little success so I understand. Second, he plainly told us he was stumped as well. Zach's symptoms/body doesn't follow any textbook and it is very confusing. All the tests that he has and blood work ups that he has are all normal so nothing makes since. Yet, his symptoms are real and they have seen them which again is confusing. He said that going to UNC childrens will probably not be the best choice, he doesn't think they can help us at this point. He thinks we need a more extensive hospital. He is thinking about sending him to either Cincinnati Childrens Hospital (yes, we have been there before but it was for a specific EE program and not as a general GI patient so we didn't see all the dr's) or sending us to NIH because they take on a lot of bizarre cases. He is also going to talk to his team this week about taking apart his roux en y surgery. The problem with that is how to feed him when his J tube is gone. His stomach cannot tolerate very  much....actually not more than an ounce at a time and sometimes not even that much so we can't use his stomach for nutrition.
The reasoning behind taking apart his surgery is that sometimes, yes rarely, you can have a complication with surgery that actually makes you worse (all he bile backup and worsened pain) so if that is the case we have to find a surgeon that would do it. His surgeon doesn't think that is the problem but who would admit that anyway. Not that it is his fault if that is the problem, there is no way to predict how your body is going to act to something like that. But again, how do we provide nutrition if it is gone?
And he also took another thyroid panel and immune test and if those come back weird then he will try to move up his immunologist appt. (right now it is scheduled for sept 23) He should let us know within the next couple of days what the plan is. We have to find out fast because he has already lost 4 lbs since the end of June.