Monday, May 19, 2014

Sike, just kidding

For all non FB friends + family, I know I told you we were home.  But sike, just kidding.  Cecilia was readmitted Thursday night in bad shape.  I so badly want to see Cecilia feel good and to be herself.  Patience. 
Maybe a few more days... maybe more, maybe less.  But here we are, at my favorite children's hospital in the country-  Childrens National Medical Center!  Until further notice, getting diuretics in check...

Saturday, May 10, 2014

Wrapping things up

Cecilia is hopefully coming home soon.  she had a quick turn- around in her recovery. 
We'll have a better idea on discharge
Monday, after Cecilia has a sedated echo.  I think it's reasonable to suspect a Monday or Tuesday discharge, since she has just done so well on the step down floor.  I think the deal breaker would be Cecilia's fluid.  She's breathing comfortably,  without oxygen, so for now I don't have any concerns that the right lung isnt improving. 
This has, in many ways, been the best and worst surgery Cecilia's ever had. 
The worst parts of her recovery was watching her struggle with oxygen so much, the high Ammonia problem, and then her IV infiltration.  But the absolute worst part of any of this experience was her sadness.   Her little broken spirit... 
The best parts of her recovery so far have been the care from her Cardiologist Dr. Lang, the care from her Attending Dr. Allen, and the care from the Fellow, Terry.    
Cecilia smiled for the first time today.  ♡  I'm so grateful to be her mom and I feel lucky to know just how special she really is.