Today we saw Dr. G for his perspective and game plan on these Audrey episodes. I explained to him everything that happened this time around and how it differed from past times. As I talked I could see more and more confusion creeping over his face.
To sum up our conversation, your symptoms are very unusual. He doubts it is CVS because of the white count—that definitely indicates infection. But he agrees viral doesn’t sound right either. A flare up of your Hirschprung’s only makes sense if we see a distended belly during these episodes—which we don’t. More than anything he says the high fever each time is the red herring. The blood could have been from a number of things…no way of knowing without looking. But even though he seemed a bit put out that nobody made finding the source of blood a higher priority (join the club), he did concede that finding the source of infection should take precedence because of the fever and white count. And he added that poking around with a scope isn’t ideal in that situation. So our plan now?
We have scheduled an endoscopy and colonoscopy. Sorry Shnook, I know that’s not fun. But at least it is not another colostomy, which is what my mouth wants to say. This may be all for nothing…the digestive tract heals quickly. But if it’s too risky to look while you are sick, we have no choice but to do it while healthy and pray we find something. Or rule some things out.
I still haven’t abandoned the idea of CVS in the slightest. Maybe high fever isn’t typical (although online it says fever is a normal symptom—and when is “online” ever wrong??) but you make stuff up all the time Audrey. You aren’t even a typical SLOS case, and when I mentioned that to Dr. G, using your hydrocephalus as an example he smiled and agreed, “She has them all beat.”
Way to go Audrey. ;-)