Written August 22, 2010 8:21 pm

Anita again slept peacefully through Saturday night into Sunday.  The sedation was lowered on Sunday morning in advance of attempting to wean her off the ventilator.  However, Anita was very tired and slept most of the day with interruptions for various physical and blood tests.  Some progress was made in the process of weaning her off the ventilator.  The medical team and family remain encouraged with this progress albeit small and slow.

Sleep is my only escape.  Sleep is my friend.  I don't like when my friend invites his dark badass dream buds to come along, but the comfort of sleep is what feels best right now.  It's the only control I have.  Just close my eyes and the room gets quiet.  Everyone leaves.  Except John. He stays. Sometimes when I close my eyes I hear whispers, "How good her color is today!"  What in the hell does that mean?  I am blown up like an Oompah Loompah from the steroids.  No one has dared to show me a mirror, but I saw my reflection in the silver sheen of the elevator door while on my way to the latest MRI.  Maybe I am like a chameleon, changing colors based on the drugs in my system.  I wonder what color I am today.

I sound so cynical.  I know they all mean well and I am so blessed to be surrounded by such loving and caring friends and family.  This is all so surreal!  Is it really me lying here on a ventilator, only able to move my right wrist, listening to tales of how good I look.  I'm a quadriplegic! Me!  I remember when I had a "spinal" for a C-section and tried to feel and move my legs, thinking I now know how paralysis feels. Not even close! There is no "feels". Right now it's only sleep.  Not rest, not dozing, not napping.  Just pure sleep!

As an Occupational Therapist , I worked with a lot of quadriplegics.  I worked in rehab for many years.  I need rehab now.  I need it around the clock.  If only I could talk and tell John.  I need continuous passive range of motion.  I need to sit up to keep my lungs clear.  I need proper positioning to avoid skin break down.  I need lots of help and I need it now!  I have lost my independence.  It's the worst thing for an OT to lose.  It's hard to express needs with eye movements.  Maybe I'll just close my eyes and sleep for now.