Monday, June 18

Monday, June 18
Room service just came in asking what Audrey would like to eat. I was polite in explaining her situation and that a mistake must have been made in this morning's orders. I guess one of her cute caregivers must have thought this poor kid deserves a steak!! (So funny. But I want to let out a barbarian warcry!) This morning's test of her esophagus seemed to show big improvement, but you know it probably means another week stuck here till it closes up. She is fine in every other respect, but still not allowed to eat and her picc line nutrition is not a good thing to bring home to my busy household. We'll see what surgery team says. I am so, so frustrated. WE WANNA GO HOME!!

A teenager on the hospital patio gave Audrey this cute balloon, and she was delighted with it!  There is something so wonderful about watching a baby discover balloons for the first time-- they way you can bop it and it bounces back, the sound and the lift of it.  They really are marvelous.  I love the way children re-open our eyes to these things!  I heard the craziest thing last week-- that in 100 years, helium balloons may be a thing of the past because helium is not something that can be produced in a factory, and we are running out-- this crazy thought sounded like some kind of urban legend, but from what I am finding from news articles, it is all too real!  What a strange thought... I guess that makes this moment all the more precious!

One really funny thing I have to tell you: the staff here all wear a portable communication device around their neck, called a Vocera. They can ask it to page whoever they need and talk to them whenever. Well, we've been here six months all told and how did i JUST learn for the first time that a nurse can speak into the Vocera and say "Beam me up Scotty" and it will play goofy scifi sound effects? (Funniest is when it asks you back, "I think you told me to beam you up. Is this correct?")

4 p.m:
Wonderful news, we get to try her G-tube again tonight!!! Only ten ml per hour, so it's only a drop, but it's a place to start! I am soooo excited!!! They are really concerned about protecting her esophagus from food in order to allow that leak to finish healing, so we are starting with continuous feeds at a suuuuper slow rate, but we will increase it gradually over the next few days as she tolerates it; the day before this started she was at 240 ml per hour for half hour increments four times a day (basically like a regular baby drinking four 8-oz bottles a day), so it will take a while to get there again, but hoo to the ray, we are FINALLY approved for some kind of FOOD again!!