Third Update: Probably CVS

Friday, November 16, 2012
Generally, Hopefully Good News!

I finally couldn't stand the waiting and called the nurse on Wednesday afternoon. She said, "Well the labs came back and they all look great, but the doctor is so surprised by this that he wants to look at it all himself before calling you back. What he saw in the endoscopy was quite different than what the lab reports are saying." So, I felt cautiously optimistic. Then I finally got a quick call from the nurse again this morning saying the doctor looked over all the slides and he agrees, there was no sign of EE! But he is not sure what is causing the inflammation of her esophagus. She could be having esophogital spasms, not sure if it would be linked to Cyclic Vomiting Syndrome or something else...anyway, we are going in to talk with him on Wednesday. The first visit with him he told me that before we could officially diagnose it at CVS we'd have to do a few other tests to rule out kidney issues, immune disorders, etc. He said she would need an ultra sound of her stomach. My guess is that based on the way her endoscopy looked to him, he will still want to do some of those tests. Unfortunately (or fortunately) I feel like as her parent who is listening to the specialized GI doctor be confused about the discrepancy, I too feel like we should do some of those "just in case" tests. Before her endoscopy I was thinking maybe I would just call it quits (well, Brian and I) and just call it Cyclic Vomiting Syndrome because in my opinion that diagnosis REALLY matches up with our Ellie. But, since he feels unsure now I too feel like maybe it's worth it to do a few more tests. I guess Brian and I will have to just go one step at a time and decide. I'd rather she didn't have to do another invasive test, like the endoscopy, because, well, it sucked. But then again I'd like to not miss something big.

Generally though, I feel like this is GREAT news. So far Ellie's CVS seems on the milder side (compared to what a lot of other families apparently go through) and so far she has responded really well to zofran. Also, now that we (almost) have a diagnosis we will better know how to treat it quickly so hopefuly no more long bouts of puking, or if there are we will know to go to the ER for IV and meds. I have a lot of questions, like if it will get better or worse and if there is a risk of her not responding to the medicines down the road, but that's just my worry-mommy stuff coming out, right now should be about celebration, I think...right?

I sort of wish I could send you all a personalized thank you card for listening and caring!

Love,

JJ