Where to begin...We just had the best three days in Denver. John did not retch once! We spent the day yesterday at the Nature and Science Museum. It was almost like a vacation. We went back to Children's and had Johns Gastric empty study, and then met with our special care physician. After two visits to Denver, and feeling great while John was there, we questioned our environment. Our doctor helped us determine that John cannot live at high altitude. She put him on oxygen until we can leave. Half way home I got a message telling us his GI test showed "mild delay in digestion", and we will put him on a med that will help his stomach empty. The doctor that ordered the study will call us with more details. That is all I know about that.
John is not very excited about his oxygen tube he has to wear. We fought the whole way home, but he kept pulling it off. When we got to the top of Monarch Pass he started feeling nausea. Then the second we pulled in to CB South he was nausea again. By the time we got him in the house he was retching within minutes. He is now sleeping with his oxygen.
So with all of that, we are leaving for Boston sometime next week. We will have a very busy week trying to pack, and hopefully the oxygen will help John get through this week. I am working on flights, and will plan to leave the 2nd or 3rd!
I don't think this is the underlying problem for him, but who knows. Once we get him to Boston, we will see what happens. We obviously will continue seeing doctors, therapists, etc. We are so overwhelmed with all of this and having to move a month earlier than planned. I don't even know what to do next. I will continue to update the blog.