Post op - Day 5

February 9, 2015 - Addie had another busy day.  She is starting to transition from an IV to taking things orally.  The goal is to get her off of her IV so we can head toward discharge.  Although Addie doesn't have a great appetite, she is eating a few bits of things here and there.  She had some cheerios for breakfast, a few bites of yogurt for lunch, and a few bites of banana's for dinner.  She is also drinking small sips of gatorade.  These are all things she ate pre-transplant, but we figured we start with foods that she is familiar with so we don't turn her off from eating all together.  The exciting part was that we didn't have to weigh ANY of these foods on a scale or try to re-caculate what she didn't eat so we could adjust the amount of protein from her daily intake.  This is a big deal for us because this is all we've known for the past 5 years.

Addie's goal in PT today was to walk.  The PT got Addie out of bed and had her walk around the room a little.  We started to head toward the door to go down the hall and Addie very much declined. She told us "I want my BED.  I DO NOT want to take a walk".  With a little encouragement, we ended up in the playroom.  It was a beautiful site.  She did great walking.  A little unsteady on her feet and we supported from both sides - but she made it, all the way down to the play room.  And once we got there - her face lit up and she was a happy girl.  Addie has true meaning of "bed head" - and yes, there are big knots all through her hair (we tried keeping braids in her hair, but she got a bath and the braid came out).  We woke a beast.  Once she started walking and had a little more confidence in herself - she asked to keep taking walks.  Yay Addie!!

Addie is still experiencing night terrors.  Not quite as bad as yesterday through the night - but she continues to wake up very scared and yelling out in fear.  Poor thing.  We did discontinue one of her very strong pain meds (dilaudide - similar to morphine) and started oxy-codiene.  We are hoping the transition will minimize these night terrors and help her little body to get some much needed rest.

The child life team stopped in for a visit today.  They brought dolls that the girls could play pretend doctor with.  They got to start IV's (without the needle) and put band-aides on and listen to their heart beats and give shots to.  Both girls really enjoyed this activity!  Before Addie "inserted" the baby's IV - she knew she needed to put a tourniquet around the baby's leg first and she removed the tourniquet after the IV was placed.  The kid knows how to start and IV.  I'm not sure if this is really cute or really sad.  We will go with really cute!

Snuggles with sissy

Can you tell we are excited about her walking?!