Mystery Illness Day 8

The infectious diseases team came by yesterday afternoon.  They wanted to switch Annie's zosyn to cipro to help get better coverage of what might be wrong in her colon.  However, since cipro is what caused her major c-diff infection 3 years ago, we decided against making that change right now.  They are doing another stool test to check for parasites and viruses, so if those results warrant the use of cipro, we'll make the switch then, but we really don't want to increase her chances of c-diff at this point.  So she's continuing on the flagyl and zosyn for now, until we get a diagnosis and know better what we're actually treating.

A second c-diff test came back negative yesterday, and today they are running a third one.  I guess to get a definite c-diff result, they always test three times. 

The biopsies from her sigmoidoscopy on Monday came back yesterday.  The biopsies showed no evidence of acute inflammation--only evidence of the chronic ulcerative colitis that she was diagnosed with 3 years ago.  So the sigmoid looks great and clear of all inflammation, yet her CRP which measures inflammation in the body, is still incredibly elevated.  Most of us still strongly suspect that the inflammation is higher up in her colon.

Last night they stopped her IV fluids and started feeding her dilute formula slowly through her g-tube.  I understand her need for nutrition now, but I also think they should have done a colonoscopy to see the condition of the rest of her colon before starting to feed her.  Several doctors agreed a colonoscopy would be helpful, but the GI team figures that since her fevers have started to come down, that her current treatment is working and they don't need to do the colonoscopy.  I think it would be better to get a definite diagnosis so they know exactly what they are treating first.  It just surprises me that they'll do so many other tests, to check for appendicitis, and pneumonia, and other things that we aren't concerned about and that aren't likely, but they won't do the one test that would actually give them information about the part of her body that we know has the issues.  I'm not too happy about starting to feed her when she is still having so much diarrhea either.  I still think she needs the IV fluids to maintain hydration.  So it was a frustrating evening.

Yesterday's biggest challenge was dealing with her diaper rash.  It is severe despite all the creams and powders we try to protect it with.  We know exactly when she's had a BM because as soon as that toxic stool gets on her skin she screams and screams in pain.  And unfortunately, she's having BMs every hour or so.  I hope that maybe the positive side of feeding her will be that her stool isn't quite as toxic and painful on her skin.

Annie ended up sleeping pretty well last night.  Her temperatures seem to be coming down and aren't as high as last week.  Today is another day of waiting for test results to come back.  We'll also transition Annie to her regular feeding schedule today if all goes well, and monitor her urine output to see if she needs to go back on IV fluids for hydration with all the diarrhea.  Since it's a snow day today with no school, Molly and Lexie are eager to come visit Annie.  They miss her and worry about her and I love hearing them remember Annie in their prayers.  Thank you for everyone who is helping with meals this week and keeping Annie in your prayers.  We really appreciate all the thoughts and prayers from friends and family.  We're praying that we'll get more answers in the next couple days.