Written October 8, 2010  8:54 pm

Anita was taken off the vent at 6:00 a.m. this morning.  She subsequently was out of bed, dressed and ate breakfast by 8:00 am.  She had Physical Therapy (PT) session, followed by an Occupational Therapy (OT) session (painting).  She then ate lunch, and had the afternoon "off" due to internal meetings for the various therapy departments.  She remained up in her wheelchair for the afternoon, took a trip around the Shepherd Center, read the latest Caringbridge guestbook entries and watched some TV.  She retired to bed and remained off the vent until 10:00pm, for a total of 16 hours off the vent.  The plan for the weekend is to have some therapy on Saturday morning, to repeat the 16 hour stretches off the vent on Saturday and Sunday and to evaluate next steps regarding ventilator weaning on Monday.

Vent weaning.  One of the hardest things I have ever done.  Ranks up there with Graduate School and Childbirth.  Each morning I am "unplugged" and my ventilator buddy stops his noisy cadence.  The silence invites fear to come into my room and squeeze tightly around my ribcage.  It takes me a few shallow breaths to realize that I can do this.  One breath at a time. I am always dizzy at first, but this dissipates quickly. The pulse oximeter (which measures the oxygen in my blood) shows that I am within safe parameters, but that does little to comfort me.

I move forward and "drive" myself to the therapy gym, leaving my "life support" in my room.  The therapists and other patients distract me, but I always feel a little breathless.  As I look around the gym here, I count my blessings.  Some folks will never be able to wean from the vent.  Some can't feed themselves.  Some are taking their first independent steps in months.  Some can't remember where they are. And yet, this room is full of smiles, laughs, hope.  It truly is the most amazing place I have ever been.  Disability is a "real leveler" (quoting John).  Your background (sex, religion, education,  family life) doesn't matter here.  We are all working towards independence.  Friendships and bonds are formed quickly.  And laughter is always welcome.

Laughter is good exercise.  It fatigues me.  But, despite my breathlessness and fears, I relish the freedom of being off the ventilator.  I can laugh out loud. And I can talk freely without the vent. And I do.  I talk all the time, to anyone who will listen.  I know I am talking too much, but I can't seem to stop.  When I am unplugged each morning the words just pour out of me.  If I could hold a pencil, I'm pretty sure I could write the next Oprah Book selection.

I asked my Pulmonologist when he thinks I will be free of the vent.  He assures me that I will know when its time.  When it bothers me to be hooked back up at night, he says I'll be ready.  I can't imagine ever refusing the ventilator at night.  It's my pacifier. I don't think I could rest without it.  When I am plugged in I can't talk.  But I can let go and relax.  Grateful that I don't have to think about breathing.  I can just sleep.  Now...for just a little while.