Day 7

10:00 pm - So excited to report that our great day has continued!  Shortly after posting my last update, the pain management team came by and decided to pull his epidural.  And although he had been slowly weaning off of it since last night, I was surprised when they came in and just pulled it right out.  Just like that.  I cannot tell you how good it feels when you start losing tubes - buh-bye, epidural!  To help control the pain now, he is on an oral medication...and it is like we have a brand new baby.  He is moving his body much more freely, attempting to play, and we even managed to coerce a little smile and giggle from him this evening.  Although I could not get to my camera fast enough, I have that sweet image ingrained in my head!  I just wish I could share it with all of you.  Hopefully, tomorrow though!  In the midst of all of this afternoon excitement, we were also surprised to find out that we were being discharged from PICU and into IMU which is an intermediate care unit.  This is so great for many reasons - we do not get bugged quite as much by everyone, we are on the super cool baseball themed 8th floor, and most importantly - we are one step closer to being home!

Hayes in his new playing field...batter up!

12:00 pm - Sorry this update is so late!  I can just imagine all of you sitting at your computers frantically pressing the refresh button waiting for the latest news.  It is not a cruel joke (although it is pretty funny to think about!), we have just had such a busy morning - pediatric surgery rounds, PICU rounds, feeding and holding, pain management visit, media visit, and more feeding and holding.  Not much to report from all of the hustle and bustle though.  Surgery is so very pleased with how the incision is healing, the PICU team wants to continue to work on his left lung, and the pain management team is weaning him off of the epidural and on to oral pain medication.  All pretty positive stuff, if I do say so myself!  Because he has been doing so well, the music therapist decided it was time to pay our little munchkin a special visit.  It was such a beautiful moment to see his eyes light up as she began strumming her guitar and singing softly, and she even got him to play some musical instruments with her.  Seeing my lovie boy play for the first time in almost a week was incredible, and I even managed to snap a few pictures between wiping away all of the joyful tears.  Is this not the sweetest sight you have ever seen?

 Love at first strum.

Playing with the rainstick. 

A little jam session. 

Big finish with the chimes!