Not really sure…

I won’t lie, things have been stressful.  We are worried about our little one.  We don’t know what it is that is exactly causing her issues, the NOT KNOWING is so hard!  On the outside, Lucy is beautiful, dare I say “perfect”. 

Her personality shines on most days, and so too does her pain.  We have been on sort of a wild goose chase trying to hunt down the cause for Lucy’s symptoms.  She continues to have all of the same symptoms she had when I last posted, but add to that list bloody, mucusy diarrhea and a ripe yeasty diaper rash.  We tested her for Flagyl resistant c-diff (a bacteria that is contracted in those who have been on antibiotics and in the hospital) and thought for sure this is what she has, her tests are saying otherwise.  We are, however, continuing her on Vancomycin, the antibiotic used to treat Flygal resistant c-diff, for a few more days to see if her symptoms don’t improve.  So far they have not.  Our pediatrician and Dr. R have both been following Lucy’s symptoms and are very concerned.  Lucy’s body is not responding with an elevated white cell count, and this has everyone worried that she is so immune compromised she has very little to fight with.  The biggest concern is that her bowels are slowing down as a result of her GI dysfunction.   I am almost too afraid to ask her doctors what that means.  Dr. R said that it is really up to Lucy’s body to tell us what it will do.  He is most afraid of her bowels translocating bacteria into her bloodstream and thus infecting her body.  We all agree that keeping her out of the hospital is safer than admitting her, at least for now.

Lucy has declined so much in the last month it is difficult to define what her baseline is.  She is on so many new medications, has a central line, and is 100% TPN dependent it is nearly impossible to say what if any of those things might be contributing to her symptoms.  The plan for tonight is to continue to do what we have been doing and report any changes in Lucy’s symptoms to Dr. R tomorrow. 

I know I say this a lot, mito is such a baffeling disease.  Your thoughts and prayers are very much needed.