Another day in our luxury suite...

(Beautiful MaKenzie on Tuesday shortly after her surgery before she went downhill--fast.)

We were moved out of ICU to a regular room on the floor yesterday (Wednesday)  late in the afternoon.  MaKenzie spent most of her day sleeping, which at this point is a good thing.  She needs to heal and repair.  She's eating and drinking great, and they stopped her IV fluids and just left the IV in and hep-locked.

Her shunt problems continue to be better, however, she still cannot sit up straight without falling over.  Walking is something she won't be doing much of until she's MUCH better.  Her conversational abilities are closer to normal, however, she's a little slower than usual and is having vocabulary issues.  For example, we were watching the Andy Griffith show and she knew all the characters, but after one of the characters told the other character to "STOP," she turned to Harold and said, "Daddy, what does 'stop' mean?" 

So, normal hasn't returned yet--not by a long shot, and they are going to decide what to do about that today, I hope.  We haven't resigned ourselves yet to the fact that we may be going home with a different little girl, but that well may be a reality.  Her primary doctor says he believes she'll regain what she's lost.  Even if she IS having seizures, I think it's possible that lots of the things we're seeing have been brought about by the utter exhaustion and over-exertion she has been dealing with. Her little body has gone through so much.  Perhaps after her body has a chance to recuperate, we will see more of her normal behavior.

Regardless, we are here for another day and praying we will find answers--praying, too, that we will be able to come home SOON.  We are missing the rest of the children like crazy and the visitation rules have changed due to swine flu fears to now only allow parents or grandparents--and even then only 2 people at a time in the room with the patient.  An almost ludicrous rule (even though ultimately, I do understand an appreciate it) for a family like ours--so many of us and so used to being all together all the time.  I'm longing for my family to be all together under one roof again--but so thankful that at least I know they are all safe and sound. 

One of the hard things about being in the Peds' ICU is seeing the grieving families.  We know all too well the pain of the parents who walk out of that unit without a child to take back home with them.  I don't think there was ever an emptier feeling than driving out of the UK parking structure the night Katy went to be with Jesus.  Anyhoo...just a good reminder to myself that even though we are dealing with some potentially serious issues with MaKenzie, there are lots of other families facing much more life-threatening problems with their children and while that doesn't minimize our issues, it does help me put them in perspective.