Our appointment went ok at St. Chris, however it was not as spectacular as we had hoped. Adam and I both walked in so stinkin' nervous and both walked out a bit disappointed. The Doctor new nothing about Gavin so we had to recount his entire life from birth -- and let me tell you, it's quite a long story. At first he didn't understand why we were referred to him just for Pseudo Obstruction -- he had no idea about the other million issues Gavin is dealing with. After we were able to bring him up to speed we could tell he was thinking but like most neurologist's they are usually men and women with many intelligent thoughts but very few words. We left with the agreement that He would look over the 100 page report that was faxed from duPont and give us a call with his recommendations.
The Amphoteracin or IV antifungal is making Gavin so sick!! I'm talking about vomit, grey, bradycardic, sweating, pupils dialated, writhing in pain type of sick. We have tried doing all kinds of premedication but it has only taken off the edge. The crazy thing is that Gavin has had this medication in the past and has done fine. He is looking very yellow/grey even off the infusion so please pray his body will react a little better to the nasty medication.
Thanks for your support.