Wednesday, February 9, 2011

Blue Food…

P2097701

What do you get when you mix blue food with white bile?  I don’t know, but I’ll tell you in the morning.  Lucy has gone and done it again…that is she is taking the road less traveled.  Lucy’s gastric output, the stuff that drains continuously from her g-tube into her bile bag, changed from being a typical yellowish green color to white, literally overnight last Thursday.

P2097697 

For those of you not well versed in the spectrum of colors that can come from your stomach bile, it ranges from a very light yellow, to green, to a very swampy mossy green which is sometimes referred to as the infamous black bile.  White bile is not a typical color that drains from the stomach, according to Dr. R even normal stomach acid is yellow even without bile.  Lucy’s volume of output is the same as it usually is, anywhere between 350-425 mls daily, this is her norm, we realize that this is a lot of fluid volume lost, but fear not her TPN is car fully formulated to make up for the fluid loss.

PC207449

This is more typical of what we see every two weeks or so when her SBBO takes over.

P1157587  P2097700

This mystery has a lot of us stumped.  Lucy has had a lot going on with her little body, that’s understatement, who knows what one or many things could be causing this.  Last Thursday we had yet another GJ-tube placed, the seventh one in two months for those of you who are keeping count.  This is absurd, we realize this too, but for the moment we have very few options but to keep replacing them when they migrate out of her intestines.  We started Lucy back on J-tube feeds Thursday night after being off of feeds for a little over a week.  This is when her bile suddenly changed color.  

I do believe that her J-tube is in position, because if it were not than I would be seeing her bright yellow meds come pouring out her drainage bag, and also she would be complaining that her “berry hurts”, as she can not tolerate even the smallest volume of anything in her stomach.  Just for fun, Dr. R wanted us to die her food to see if we detect any of it in her bile bag in the morning.  I am pretty sure we will not, but it is definitely worth trying.

We are suspicious that there is something going on with biliary system, we just don’t know what.  Possibly something with her liver or gallbladder, or even her pancreas.  What is reassuring is that she does not appear to be in any distress, sure she complains of stomach pains off and on, but nothing out of the ordinary. Her weekly labs were not very telling, there were a few things that have us wondering, but nothing so obvious that we can say for sure what is causing this. What we all agree, this is NOT normal... normal is so boring! 

Well keep you posted…

2 comments:

Susan said...

Oh, Lucy, Lucy, Lucy... you do have to keep everyone on their toes, don't you?! Praying for ... blue? ...yellow? ...green? ...ok, not quite sure what color to pray for, so we'll just leave that part up to God. God's joy and peace to you, little girl!

Jessica said...

Hmm, seeing the drainage, it looks a lot like E's did when it had some formula backing up into it. It will be interesting to see what your dye test shows. Reverse motility is a difficult reality for many of our kids as the disease progresses. We dyed one of E's meds blue 3 days ago (1 ml of med and 1 mL of dye) it went into her J, and 3 days later her G-tube drainage is still blue... sigh.

Hope you figure out the culprit for Lucy! By the way, she is looking more and more grown up! And so sweet... :)