Day 11: Coo to Withdrawl

The morning started great.  Shayna opened her mouth for her bottle and ate 2oz in the first hour post tube-feed with a by-mouth total of 8oz.  She cooed for the first time in December as she lay in my arms.  PT came by to teach/tell me what I need to be doing with her to get her back in shape.  Shayna responded well to a supported sit and the chair they brought that I can lay her in and actually tried to reach for some of her toys.  From the chair, she was able to pick up her tissue packet, that she loves to chew on, from her lap and try to get it in her mouth.  After a couple misses she got frustrated and flung it from her.  I put it back on her lap only to have her toss the offending packet off a few times.  Great practice to get her arm strength and coordination back.  With our work today, she learning she can move her body herself again.  It hurts but not as much as before.

On the down side, she's suffering from withdrawal from the PICU pain med Fentanyl.  She's on Methadon to help with that (and the pain) but still had the sweats, was extremely jumpy at slight noise and touch, and jittery in general.  It was a frightening experience for Nahum and I.  She spent a lot of time in my arms this afternoon and evening getting what comfort and rest she could.  She never did nap today but did manage a couple fitful rests with Nahum and I.  She seemed a little better at 10pm so I stuck with the plan and Michael is with her tonight so I can sleep (last night I slept from 1am-7am with 4 wake-up calls in between from Shayna, her machines and the nurse).  Hopefully she's sleeping now.  She's also on her 3rd official fever (over 38.5C or 101.5F) that requires a blood culture.  These are common with transplant and often unexplained.

The days just get busier.  I'm going to make use of my night away from beeping machines and get to bed.