I feel "mixed" about the Denver trip. They didn't do alot of extra testing like I expected them to. The only test they could think of that hadn't been done already was a blood test for Paroxysmal Nocturnal Hemoglobinuria (PNH), which seems pretty unlikely to me to come back positive. We'll see!
The doctor classified what Noah had as a "Thrombotic Storm" and entered him into a Genome Research Study (more information at http://www.stoptheclot.org/News/article181.htm ). We won't get any specific info back on Noah, but if it helps in the research process, great.
Hmmmm..... what else?? So I guess we just go back to taking Noah to Primarys with any new and unusual symptoms and hope that eventually we will either figure out what his diagnosis is, or he gets better.
Monday, November 1, 2010
Bright and early tomorrow morning the boys and I are heading to Denver so Noah can see the hematologist/thrombosis specialist out there. He seems to be doing fairly well for that last few weeks. The only real update is that we took him in a couple weeks ago for a follow up echocardiogram for a dilated aortic root. The aortic root was about the same, however, the cardiologist said he peaked at his IVC (where the clot 'was' but apparently had gone away), and he thought that it "might be back". I wasn't sure what to do with that information except wait for Denver. So hopefully this doctor will not only tell us if the clot has actually come back, but also what in the heck is causing it!!!!!!!! Please, everybody pray that we'll have a safe trip and that we'll come back with some answers.