Good news! the GI doc says we can try opening his unhooked time to 8 hours off TPN! Although his citrulline level hasn't changed from the last time we looked, and he isn't super interested in food, and he's also weaning himself off the boob (this is turning out to be much harder for me than him), I have to keep hoping.
I asked about Gattex, but doc was not willing to try it just yet, especially since its indication is for kids with villi, just short guts. But, she's planning to go to the Short Gut Syposium at Pitt in September, and hoping to meet Puder and Gura. That's the week preceding our scheduled trip to Boston.
Weighed in at 19lbs, 3oz (with cotton diaper; last weigh-in was in the buff)
