Thursday, December 6th

Life on the floor tends to be a little less invasive, which is nice.  Carla did sleep for about 2 hours in a row last night and then a few times she slept for 20 or 30 minute increments.  The rest of the night she rolled around in a steroid induced irritability ... rolling from side to side on her bed and having diarrhea several times.  Frustrating.

This morning though she seemed to be more lucid and calm.  She seems to be doing things with a bit more of intent, instead of just impulse... which is a great improvement. Carla has also been weening from her oxygen for the past couple of days and this morning, the doctors decided she was able to fly solo with no O2s!  She is doing great, and her new heart is doing it's job! Honestly, I think if she hadn't have had the Tacrolimus toxicity we would probably be in our apartment by now, or at least very close to being released.

Carla IS slowly making improvement though, IN FACT, she spoke to me earlier!  I was trying to take her to the bathroom and she said "No Mom", or something of the sort.  She was trying to tell me that she didn't have to go! It was pretty fantastic that she was able to communicate with us!  The speech therapist said that with brain injuries the initiation of speech is what is difficult... so as the brain heals, there will be times when she can talk, mostly on instinct, and then when she is trying to think about saying things it may be more difficult for her brain to initiate.  Any way you shake it though, the fact that she spoke is progress in the right direction!

Today Carla saw a physical therapist, speech therapist and occupational therapist.  She played pretty well with the play dough, which the OT thought was great (her hand control has been pretty non-existent).  She was also able to go for a ride in a red wagon!  The docs are going down on her steroid dose a titch, so we think that will hopefully help her agitation and maybe she will be able to rest better.  They are also going up on her melitonin dose, so hopefully that will help too. Carla hasn't had a night's rest in about 2 weeks.  So, she is long over due.  Poor baby only sleeps for 2 to 4 hours a night and usually it is in 10 to 20 minute increments.  So, no REM sleep...this is horrible for her brain...and ours too!

All in all, things are improving, although not nearly as fast as I would hope.  I'm sorry if this blog is discombobulated, but I'm having a hard time myself focusing after only a few short interrupted hours of sleep.  Please pray for Carla's continued neurological improvements!  Thank you!

Love, Jen


Anonymous said...

I pray for you all everyday! Thanks for the updates! God Bless, I'm hoping you can be he for the holidays!!!

Anonymous said...

I am praying for all of you to be able to get a full nights sleep! (in fqact -several of them!) Thank you for always finding the time to update the blog!!! We all live for that . . . but PLEASE don't neglect your health / sleep! Our little princess is going to come through this (I have faith!!!!!) and I just want to be sure that you are all rested and ready - - - - we know this little princess is full of spunk! I sooooo love you som much!!!!! ~~ Karen ~~

Anonymous said...

Keep up your positive thoughts, she will get better and you will all be able to go home. You are an inspiration to all of us reading your blog, I pray for you and your family. God Bless You!