It's Andrea. We are sitting at my parents house (bc they are 10 mins from the hospital/doctors). Joe, Ella and I are sitting around waiting to hear about a new test. They want to test E's reflux to make sure that if she is refluxing from her stomach that we fix that as well. Here's the issue. When Ella swallows any fluids or anything with liquid then a portion of it goes down into her lungs and she doesn't have the muscle control to try and cough it up. This could be a problem if they put the feeding tube in and she ends up with fluids coming back up her esophagus and then down into her lungs. If there is a reflux problem then they will do 2 surgeries at once...one to seal off the stomach from coming back up, called Nissen, and the second is to input the tube (they would do a "button" instead of an actual tube).
So, we are waiting to hear about the reflux test so that we know if we need 1 surgery or 2...two done at one time.
The surgery will probably be this weekend bc they aren't sure they can get us in today.
Just pray for peace right now. Joe is holding up well, bc he has so much strength...but I have my moments where I break down.
love you to you all.