Nobody tells you about this part...

When we were waiting for a new heart, the whole idea was that Carla would get a whole fully functioning heart, and that after the surgery she would recover, we would go home and life would be good.  We would get used to a new med schedule (because it's not like she hasn't been taking  meds her whole life.) And we would just move forward.

They don't really warn you what can go wrong during recovery, plus the fact that the doctors pump so much poison medicine in your child that it completely alters not only their state of mind as well as their tolerance button.  We know about heart surgery recoveries.  We have been through three of them.  We have spent countless days and nights in the hospital at our daughter's bedside.  But what we weren't prepared for was  the medicine for the new organ poisoning her brain and making her recovery so much longer.  We have been in the hospital for 25 days now.  Carla is inching her way to getting better, but she still has so much further to go... and she is so angry.

Carla has been so extremely frustrated!  All day yesterday you could barely even look her direction without her grunting at you.... kind of like a caged animal.  If you come close, she wants to bite you or hit you.  She is so DONE with being messed with, and honestly, I can't blame her one bit.  I'm done with her being messed with.  All I want is for her to get better so that we can take her and run as fast as we can out of here.

I wrote this all this morning, before Carla woke up. And then she woke up... This morning is like a whole new Carla.  She is doing her cute little mannerisms, she is answering questions and talking, was able to drink out of a straw and right now she is sitting in her Daddy's lap, playing temple run on the iphone. Wow!  What a difference a day can make.  Here's to more and more improvements like this one!

Thank you for your continued support and prayers.

Love, Jen

p.s.  today we have PT, OT, another swallow test, an echo and Bobby and I have transplant training.   Going to be a busy day.  

1 comment:

Jerry and April said...

Hi Sweetheart, Uncle Jerry and Cousin April just popping in to say we love you and are thinking of you always. Tell Bobby hi from us, hopefully we can get together soon.
LOVE YOU, Uncle Jerry