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.

Written October 7, 2010  8:54 pm

Anita was up, dressed and off the vent by 8:30 a.m.  She had an Occupational Therapy (OT) session, focused on eating breakfast.  She then had a Physical Therapy session, which was followed by a short Recreational Therapy session.  She then ate lunch.  In the afternoon she had an OT session which focused on home requirements/accommodations.  Anita then returned to her room and watched her afternoon Soap.  She then ate dinner, and participated in a Skype video call with family members in Midlothian.  She then read the latest Caringbridge guestbook entries, and watched a DVD (Northern Exposure episode).  Anita retired to bed and remained off the vent until 9:30 pm, for a total of 13 hours off the vent!!!

Caringbridge. What a wonderful way for friends and family to stay in touch during trying times.  John's postings provide a touchstone for him.  His daily updates keep our friends and family in the know and allow John more free time away from the phone.

But the best part of the Caringbridge is the well wishes , prayers and encouragement it provides me.  John pulls up the site each night before he leaves for his room at the Shepherd Center.  He either reads me the postings, or positions the computer so that I can see them.

There are so many.  Some nights I fall asleep before getting through them all.  It's wonderfully overwhelming.  I am surrounded by love and prayers.  I feel it. The well wishes warm my soul and keep me motivated.  The stories of the boys, Trudy, and the happenings at home, make me smile, but weigh heavy on my heart, making me long for my old life.  Will I ever get it back?  There is sadness , wondering what lies beyond The Shepherd Center for me.  But the Caringbridge inspires me.  It is my night light that helps me get through just one more night.  I will never be able to thank you all enough.  Now...for jut a little while.

Written October 6, 2010 7:21 pm

Anita had another good day.  She was up and dressed and ate a good breakfast.  She went off the vent at 09:00 a.m.  Anita then had a pet Therapy session with Maisy, a friendly Rottweiler, which was very much appreciated.  A meeting with Assistive Technologies followed.  She then ate lunch.  In the afternoon, she had a group therapy session with other patients.  Anita then participated in a Skype video call with her sons, her mom, and her cousin.  Anita then read the latest Caringbridge guestbook entries.  Anita is touched by and feels the many good wishes and prayers heading in her direction.  She looks forward to hugging and thanking everyone in person.  She also thanks everyone for watching out for and supporting our family, including Trudy, during this time away from home.  Anita then retired to bed and remained off the vent until 8:30 pm, for a total of 11.5 hours off the vent!!  She then rested for the remainder of the evening.

There are many service dogs here at the Shepherd Center, helping some  of the working staff perform their jobs.  Golden retrievers, Yellow Labs, Black Labs.  They are beautiful, but they are working, so I am not supposed to pet them.  I've always had a dog in my life. It's a comfort to me to just observe these  magnificent canines.

I miss my dog.  I think of her often, knowing she would be here if she could.  Helping me with my recovery.  Trudy's soulful eyes looking up at me. Her slick black  head resting on her spotted paws.  Understanding me.  Loving me just the way I am. Wanting no more.  Well.... maybe a treat.

Animals are good for the soul.  My visit from Maisy, the "therapy dog" was the best therapy I've had at Shepherd.  Maisy is a huge black and tan Rottweiler.  I heard her collar jingle as she came into the therapy gym door at my back.  I was side lying on the mat in PT when she arrived.  Her owner asked permission for Maisy to visit.  I joyfully accepted. This warm heavy dog jumped up on the mat and spooned me.  It was wonderful.  What a gift.  She stayed there for a good 5 minutes, nuzzling my left hand (my weaker upper extremity) encouraging me to pet her. 

I smiled ear to ear and did the best that I could.  When satisfied with my "performance", Maisy jumped off the mat and sat on the floor looking up at me.  She was beautiful.  Working at the Shepherd Center, I was sure she'd seen more than her fair share of suffering.  But her eyes didn't show it.  There was a kindness in those brown eyes.  An understanding that went beyond human comprehension.  Maisy didn't ask for one more rep on an exercise.  She didn't pity.  She just knew.  What a blessing to get a visit from such a kind soul.  Dog therapy.  The best yet.  Thank you Maisy.  Now....for just a little while.

Written October 5, 2010

Anita had another busy day today. The day started with coming off the vent at 7:30 am.  She then showered, dressed and ate breakfast.  She had a Speech Therapy (ST) session in the morning, followed by a Recreational Therapy (RT) evaluation.  After lunch Anita had another ST session, followed by another PT session.  She then returned to her room, watched some Soaps and remained off the vent until 5:00 pm, a total of 8.5 hours off the vent!!!  She then returned to bed and rested for the remainder of the evening.

A shower.  At last.  Another something that I used to take for granted.  It's been almost two months.  I am ready to feel the water flowing over me. The way I used to wake up.  Maybe I will do better in therapy today after participating in my old morning routine.

Of course I can't take my ventilator buddy into the shower, but today I am unhooked early and my tracheostomy is covered.  I can't let the water flow down over the top of my head, but there will be a hand held shower head rather than a bed bath.  Bring it on!

My OT arrives promptly at 7:30 a.m. to evaluate my showering abilities.  She transfers me by hoyer lift into a special shower chair.  Its seat is horseshoe shaped, open in the middle, allowing for "undercarriage" washing. I am wheeled into the shower room which is large enough  to be a car wash for compact cars.  The entire room, sans ceiling, is covered with medical grade beige tile.  There are two handheld showers and the floor slants down to a huge drain in the middle of the room. Voices and noises echo as if we are standing at the edge of a canyon. It's sensory overload for me.

The kind therapist removes my hospital gown and turns on the faucet.  The water feels sharp against my skin and I discover I can't feel hot or cold.  My OT picks a comfortable temperature and sprays me down.  She squirts liquid soap into a washcloth that is placed in my hand.  I can't squeeze it enough to wring it out. I am only able to wash the tops of my thighs somewhat effectively with my right hand.

Reality slams me head on once again.  I can't do this.  Bathe myself. I certainly never pictured this as part of my path right now. But I said can't.  That word is not welcome at the Shepherd Center.  My OT picks up the washcloth and finishes where I have failed without a bother.  She doesn't mention my inadequacies, but rather, starts a conversation about favorite soaps, lotions and shampoos.  Her kind distraction is welcome and blocks the lump in my throat and the tears in my eyes.

Despite my dependence in this basic life skill, I am delighted to get away from the bed bath.  It feels so good to be clean.  I am transferred back to bed where the nursing assistant dresses me and hoyer lifts me back to my power chair.  I can take myself to the therapy gym now, with clean hair and a renewed determination.  I can do this.  Now...for just a little while.