Food in a Bag

By Stephanie

Avery is doing MUCH better today.  For the first time in almost two months she is NOT loosing weight...wish I was.  And she was "chatty Kathy" at the doctors.  He noticed right away how much better she seemed.
It's thanks to TPN.  Total Parenteral Nutrition.  It looks like a bag of milk she gets through her IV.  A nurse came to our house last night to show me how to hook her up (through her port).  It runs for 12 hours so I had to unhook her solo.  We did fine.  Tonight another nurse is going to come watch me to make sure I am doing it right and answer questions.  We are going to be doing this every night until at least Monday.  They will then reassess her and see if we can stop and do the NG tube.  She did throw up this morning again, but she was able to keep her meds down (Thank heavens!).  She also got up to pee five times last night.  HOORAY!  That means she is getting enough fluids.
It's just been a bit more difficult this time around.  Having a new doctor that doesn't know you or your kid takes some time.  But we are getting there.

See the prayers are working already (as if they ever stopped).


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