CT Scan Results and Scopes Scheduled

We met with the GI doctor today and he went over Annie's CT scan results with us in more detail.  He said that it showed lots of inflammation of the colon, even in the sigmoid (near the rectum) which is somewhat unusual.  C-diff usually is located in the right side (ascending portion) of the colon, but in Annie's case, they highly suspect that the entire colon is full of c-diff.  The CT scan also showed a possible redundant cecum (a twisting of the colon near the appendix).  The GI is doubtful that she actually has that, but agrees that we need to verify with another test. 

The GI also believes that there might be underlying issues in addition to the c-diff since the c-diff is not responding as everyone has expected.  Doing a full colonoscopy is incredibly risky and dangerous because with Annie's amount of inflammation, it increases her risk of a bowel perforation.  And with all the c-diff present, if her bowel were to perforate, the c-diff would escape from the bowel which she would most likely not survive.  But the GI doctor feels like he needs to get a look inside, so tomorrow Annie will be going under general anesthesia for an upper endoscopy (a scope to look down her esophagus, stomach, and just into the top of the small intestines) as well as a sigmoidoscopy (a scope up the rectum just into the sigmoid).  Although the CT scan shows inflammation in her sigmoid, the tissues in the sigmoid are much tougher and much less likely to be perforated.  The GI will see how the tissues look beyond the sigmoid (up into the descending colon) and if he sees healthy tissue, he will continue to scope until he finds inflamed tissue, but he will not continue into the transverse colon at all. I highly suspect, as does the GI, that he will not be able to pass the sigmoid due to high levels of inflammation in the descending colon, but we'll just see what he finds.  While scoping, he'll also take a biopsy to try to get more information about what's going on.

Then on Thursday, because of the possible redundant cecum, Annie will have an upper GI test.  She's a pro at these UGIs since she has had at least 6 or 7 in the course of her life.  A UGI is where Annie will get a barium contrast put through her g-tube under x-ray video.  So hopefully these next couple of days will give us more information about how to better treat Annie. 

We were incredibly frustrated yesterday when the new ID doctor came on rounds and changed the treatment plan from what was originally planned with the previous ID doctor.  We ended up talking to the pediatrician about it this morning and he agreed that we needed to proceed with the treatment that was originally planned, so we have now stopped her IV flagyl and have finally doubled her vancomycin dose to the maximum dose she's allowed to receive.  I have high hopes that this vancomycin boost may do the trick.  They'll give this new dose 10-14 days to work, at which point, if no improvement is made, they'll consider the fecal transplant (unless of course, we learn more from the scopes tomorrow).  We learned today that a fecal transplant has never been done at this hospital before, so we're not quite sure what that would mean in trying to get it done for Annie here.  Ideally we won't even have to consider that if Annie starts to respond to this higher dose of vancomycin. 

Annie's temperatures are continuing to increase--up to 103.8 today--but so far no source other than the colitis can be found to blame.  Her pain and fussiness has also increased the last few days which is difficult and makes us feel even more helpless.  We've been on an emotional roller coaster for so long now and the hills seem to only steepen.  Tylenol is not always bringing down her temps and the longer this all continues the more we consider the worst-case scenarios.  Small improvements help us feel so hopeful, but then more set-backs arise.  We're trying to stay optimistic but it gets difficult at times. We really appreciate everyone's prayers for Annie.