I got a call right before Bob and I headed out of town that a few more of his lab results were in, although we are still waiting on alot.
Eli's protein was low, although we aren't sure why.
His creatinine was really low. She thought he only had 1 kidney and that it could explain some of that, but nope he still has both. We do know that 1 doesn't work well BUT his creatinine has still always been quite a bit higher.
The biggest shocker was in his liver enzymes. His AFT (normally is 7 to 40) Eli's was 255. His ALT (normally 7 to 50) Eli's was 430. They don't completely freak out until these numbers are 1000 that being said alot of the early symptoms we would be watching for with liver failure would be masked by Eli's other symptoms. So they have us watching for yellowing of skin and eyes and copper colored urine. They GI and geneticist are talking together along with Eli's medically complex doctor and trying to figure out what next and what's going on.
From a parents perspective we are concerned. We've been told not to freak out yet, and we aren't, but we have been told concern is fine. That's concerning.
So as of right now it looks like something is going on with Eli's intestines, pancreas, and liver but nobody knows what.
We will update as we know more but obviously it's Friday so it will be early next week before we have any more information.
On a side note Bob and I got back this evening from our vacation. It was amazing. We were gone for 3 days and 2 nights. The bed and breakfast was amazing, and we packed our time with tons of outings and museums and different foods. We are so thankful to have had our time away and are so thankful to the amazing people in our life who helped this happen!