Lots of unclear action from Ellie's ostomy with up days and then down days. We are taking the lithium approach to these-riding neither the highs nor the lows but watching our girl be happy in the middle of these waves. She just doesn't seem to notice what her numbers are doing. Which is nice but underscores the need to watch all of this very closely.
We have been in touch with her doctors at Childrens and everyone is watching her these days and thinking of physical, chemical and biological reasons that things are going screwy. We are going to try a course of a new antibiotic this week and see where it goes.
If things stay this way we may need to check her in for a few days to go NPO (stop feeding her) and let her pipes clear out. That would likely mean another round of TPN but after two months off we aren't so concerned about that for a few days.
We have never been so glad that we count everything as we have been in the last few weeks. Having 'the numbers' makes everything a bit more controlled, gives us an idea of how things are going, and tells us when we might need to call an audible and change course.
we are off to Maine to visit my parents and fmaily for a few days in the morning. Maybe what her bowel needs is a change of scenery or a dose of Aunt Beth fawning over her...
2 comments:
Rooting for you... hang in there! She looks so cute at the sink. 5 yr old daughter loooooves to do the dishes- just not in a productive way.
We're thinking of you guys and hoping that Ellie's system gets back on track soon.
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