I hope you get more info soon ! It must be driving you crazy ! I know it would be doing that to me, even after 8 years of wondering what is on the horizon with Braden, it still drives me nuts . The ileocecal valve is the thing that starts w/ an i . They will often treat NEC as suspected sepsis, because that way they will have the heavy duty antibiotics needed to treat sepsis vs those needed to treat 'just' NEC. If his bowel was perferated (and therefore the surgery was needed) then he probably was septic. Sepsis is a very dangerous systemic infection in the blood stream. Hopefully if he does have part of his small intestines removed, there is not much gone. The segments(s) they removed are important to know too.
Did the nutritionist talk to you aout electrolyte imbalances ? That can be a problem with babies with chronic diarrhea.
Do you have a list prepared for the GI dr ? Would you like me to help you prepare a list ?
We haven't seen any GI drs in CA, but one was recommended (by Braden's dr) to us when we were on vacation in San Diego. The GI dr grew up in southern CA and has a lot of connections there, so that is why I though he might be able to recommend someone.

Lorraine

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