Post Surgery Day 31

Ellie has a new love...wagon rides.  They have taken the place of swinging in her swing and it almost seems like it is the only thing that will work to get her to fall asleep.  She has never been able to experience wagon rides during any of her other hospital stays because of the monitors that she is hooked up to.  This time around the nurses don't care as much because they would rather have her get some sleep.  I think Ellie has been asleep with so many medications helping her over the past 4 weeks that now it's difficult for her to fall asleep on her own.  I don't know what we are going to do when we take her home and there are no halls to roam.  Either the swing or bouncy chair or preferably her crib will do.

Today I was coached on how to place her feeding tube - something I've been dreading because it seems so uncomfortable and now I have to be the bad guy.  It went down pretty easily and was placed in the right position the first time.  Hopefully we won't have to replace it too often when we bring her home. 

Ellie had a regular bath for the first time since all her scars have closed up.  Boy, does she have a lot of scars from the surgery, 3 chest tubes, external pacing wires, pacemaker and various IVs and central lines.  She even finally got some clothes and a headband on.  We spent some good quality time with Ellie and she was awake and wanting to be held the whole time.  I loved it because it seems like we finally have the old Ellie back.  The old Ellie who didn't mind being touched and loved to touch, who kicks and swings her legs, who likes to babble and sing and play with the maracas.  She's still on a pretty large dose of narcotics but at least she seems normal.