Slow days in the process

We have had a bunch of slow days this week.


Ellie hasn't made any great progress on her treatment but hasn't hit any snags, either. She is cruising along on 2 ml per hour through her J-tube (into her intestine) and has been pooping regularly for us.

She is showing some signs that this tiny amount may be her limit for now, however, when she gets uncomfortable for no reason. Tonight, she spit up a bunch of green bile for the first time in a while. Her surgeon told us that her intestine can hold many days worth of food and that by the time that this happens, she may be very full down below, which is a bad thing. we are trying to get to the point where we can see that she isn't tolerating her food and slow things down to avoid over inflating her bowel. This is a fine art and tough to do, but we are trying.

We spoke with her suregon today and we are going to try to treat her medically with a new medicine (cisapride, or propulsid) which was removed fromthe market a few years ago because it causes heart problems in a very small percentage of kids. If she is approved for the study that is being done here at Children's (the publish or perish rule kicks ass) she will go on this wonder drug and be monitored very carefully to make sure her heart is doing well. The doctors light up when they talk about this drug because apprently it puts a lazy bowel into gear very well, something that Ellie needs right now.

Ellie is still in great spirits and continues to be great fun for Abby and I, her nurses, and her audience of visitors.














We are trying to get her to stick her tongue out but haven't made much progress: