Good news at the ChIRP appointment

ChIRP = Children's Intestinal Rehabilitation Program

I took Ryan to his appointment today and learned a lot of new things:

#1) Ryan is a whopping 11 pounds 11 ounces and has gained 47 grams per day since the last appointment.  They wanted him to gain just 25-35 grams per day.

#2) This means the next prescription for TPN will be even lower--they are decreasing the TPN calories by 15%--this is considerably fewer calories than the original TPN order upon his discharge from the NICU when he was only 7 pounds--more baby steps toward getting rid of it!

#3) Ryan is doing this with only 111 kcal per kg per day (from gut + IV combined)--most short gut babies need 130-150 kcal/kg/day to achieve good weight gains. so he is doing great--all the clinic staff are thrilled with these numbers.

#4)labs look good.  total bilirubin is 0.4! (it was 17 not too long ago). only thing is continued anemia and possibly some continued vitamin D deficiency despite our vit D supplement.

#5)Ryan is now able to be off the TPN for SIX HOURS PER DAY! possibly even longer if his weight gain is steady over the next few weeks. So he will be TPN-less from 3pm-9pm each day (might we even be able to go to small group as a family?  we shall try!  another step toward normal!!!)

#6) we are getting started doing an ethanol lock on the central line.  I'm thrilled about this and have been asking about it for quite a while and Ryan is finally big enough to do it.  this is a relatively new technique and hopefully will decrease Ryan's risk of a line infection.

#7)Ryan can stay awake for 6 hours in a row...though he is totally not happy doing so

#8)Ryan likes maroon 5.  who knew?..really only 'Harder to Breathe'...so we played that 5 times on the way home.