Written August 26, 2010 8:39 pm
Good progress made today with the process of weaning off the ventilator.  Anita spent the day breathing "spontaneously" on her own, with the ventilator connected as backup.  Good likelihood that she could have the tube/ventilator removed over the weekend/early next week.  Anita continued to be tired with her spontaneous breathing, and slept for a large part of the day.  She did manage to read some cards, emails and Guestbook messages on the website.

Dreams.  Some still haunt me.  I vividly recall the huge black seal like creature in an aquarium on a wooden pier.  The boards were weathered, tar stained, with gaps between each just wide enough to lose a quarter.  The air was thick and damp.  Oil drums on the pier provided a barrier to the water and the air was slick with their residue making it hard to  breathe.  I feared this creature.  I am an animal lover, but this one elicited that primal fear in me.  The darkness.  It's like I was looking down on this scene, viewing it like a movie. There were several people standing on the pier watching this beast as it cut through the water curling in on itself in the confines of the tank, obviously restless, agitated.  There was a man there in a tattered dirty khaki coat and worn baseball hat.  He seemed to be in charge.  I wanted to stop watching.  I appeared to be the only one scared.  I was trying to hide my fear from the others.  I'm not even sure who "the others" were.  I don't remember much else from that dream, but the fact that it has stayed with me for over three years amazes me.  And, it still scares me.

It was scary to be told, "breathe on your own."  I remember feeling so fatigued, not understanding just how breathing could wear me out so.  My breaths were shallow.  I wanted to extend my arms to open my chest and gulp in air like a hungry dog devours his food, but I couldn't move them.  It felt like someone or something had sucked all the air out of the room and then sat on my chest.  They tell me I'm doing well "breathing on my own."  I don't understand.  I want to do well.  I want to get better.  Why can't I breathe on my own?  I can't ask anyone.  I just watch and nod.  And sleep.  It's my escape until big black sea creatures chase me back to wakefulness. There is no where to hide.  This is my reality now and I must face it.  I have never been so scared in my life. I close my eyes and visualize large white wings cradling me, protecting me.  They give me strength and I pray.  I pray for courage and protection.  Patience and peace.

Written August 25, 2010  9:00pm

Happy Birthday Anita, Rufus, Toof, Wife, Mom, Daughter, Daughter-in-law, Sister, Sister-in-law, Cousin, Aunt, God-Mother, Fairy God-Mother, Friend, Neighbor, Volunteer, Teacher, Student, Writer, Reader, Piano Player, Walker, Dog-Walker, Friend of Nature, OT, Lover of Life and future ex-patient.
After a long day of exertion, sleeping peacefully.  Thank you for all the birthday cards, banners, photos, wishes and sentiments.

I remember the Happy Birthday banner on the wall.  Big block silver cardboard letters hinged on each other and sprinkled with primary colored confetti. It seems like it hung there forever.  I used to stare at it and make up words out of the letters.  Birth and day were obvious, but what about ha, hap and app.   (Watch out Dr. Seuss!) There was no cake at this birthday.  No party hats.  No Coke.  But there was a lot of love, prayers and well wishes.

John's post brings to mind how many hats we all wear every day.  I have been blessed for the opportunity to try on so many in my life time.  Some fit well and some didn't.  I have had a varied education, career, friends, family and travels.  I've always been fueled by new opportunities.  New ideas. Always willing to try on a new hat.

But I had to hang all my hats at the door when I came into this hospital.  As a "doer" that was hard. I had to pass the baton to those who could talk and make decisions.  The Mom hat was the hardest to let go.  I didn't want my boys to see me like this.  I wanted to hide.  Run away.  I could see the concern on their faces.  I couldn't touch them, talk to them, reassure them.  Like the hats, the feelings had to go into the box. Checked at the door. 

John wears the husband hat well.  He is constantly reassuring me.  I see the love on his face and in the tears that escape from his eyes.  He is a man of action and I know this uncertainty is gnawing at his resolve.  The strain of waiting shows on his face.  I feel it myself.  Patience.  I pray for it.  patience and peace.  And how about a do over for this birthday.

Written August 24, 2010  9:00 pm

Slept through the night without sedation, requested to be turned  (i.e. bed position) every couple of hours.  Rested thru the early part of the morning and then read some cards and Guestbook messages on the website.  Got thru all messages posted thru the end of Saturday, Anita continues to play catch-up!!!  Thank you so much for your continued kind sentiments and support.  Further efforts continued with the process of weaning her off the ventilator, and modest success/improvement was achieved. As was the case yesterday, she became tired. And the process ceased this evening until tomorrow whereupon it will be resumed.  At days end, Anita was somewhat exhausted from her exertions with the ventilator weaning, but was resting comfortably.


John reads the messages left for me on Caringbridge.  So many people are thinking/praying for us.  It's overwhelming!  Their kindness is humbling.  I want to thank them all.  I want to talk to them, smile at them, have a Coke with them!  I want to go home.  I'm so tired.   I don't understand any of this.  When I am lucid it's scary.  How has this happened and when will it stop?  I still fight but I'm not sure why.  It's hard.  John is so patient.
There's a small window that allows me to see outside.  Besides sleep it's my only escape.  I can't see much beyond the roof of the building, but the occasional bird flying by or raindrops rolling down the window pane remind me that nature is out there. I must be patient.
Before I got sick I was an avid walker. My dog, Trudy and I walked every day. Nature was my muse.  The trees, the lake, the wetlands, the owl, the heron, the fox.  They all inspired me. They brought me peace. They gave me fodder for writing and musing.  Solace for my soul.
Sometimes the sun shines through my small view of the outside.  The nurses pull the blind to get the sun out of my eyes.  They shut out my piece of peace.  They don't know. I wish I could tell them.  I like  when the blind is left open at night and I see the rare shining star I can wish on.

Written August 23, 2010  9:00pm

Another good nights sleep.  Sedation medications were changed this morning from propofol to precedex to increase her alertness while managing the discomfort associated with the ventilator tube.  As the day progressed, the precedex dosage was decreased to zero, as was the insulin drip (administered to deal with the high sugars associated with steroid treatment).  Anita was quite alert during the middle part of the day and received family visitors.  A short round of OT was performed during the afternoon.  She was particularly focused on getting a coke, but the medical personnel were not so accommodating despite repeated requests!!!  Further efforts were made in the process of weaning her off the ventilator, but she became tired and the process was discontinued until tomorrow whereupon it will be resumed.  At days end, Anita was off all medications except for an IV saline drip, and was sleeping comfortably.

I want a Coke!  I want a cold one in a plastic cup with lots of chewy ice and a straw. I can feel its sweet coldness soothing my throat and waking up my senses.  Crunching the ice, quenching my thirst! I remember asking several people for a Coke. I was able to mouth the word and be understood.  This is a milestone.  Communication. Being heard.  Now if someone would only get me a Coke.  It became my new obsession.  When I wasn't praying or visualizing walking, skipping, and running, I was perseverating on the attributes of this icy drink.  Maybe a Coke was the cure I needed. At least the thought of one distracted me from this medical mystery. Now....for just a little while.

I began to slowly awaken to the reality of this situation.  I'm not sure what has happened.  There is no window to look out and no insights to look into.  I remember thinking it must be serious, my mom is here.  She seems calm and looks well, so it must not be too bad.  How long have I been here?  Is it now or later...past or present?  What tense?  Why can't I hold onto a thought?  I need a Coke. 
I want to be well.  I want to go home.  I'm sure I will go home soon.

The dream monster came again.  John and I were at a Carnival.  We went into a tent.  There was a fire burning brightly in the middle of this canvas canopy.  It had a Medieval feel and we were dressed in stiff muslin clothes.  We were told we had to swallow glass swords that were heated and shaped over the fire.  Mine was a swirl of orange and clear glass.  It was very sore going down my throat, but I did as I was told.  When I tried to pull it out, it broke off in my hand.  There was no glass in my hand, but a piece was stuck in my throat.  Maybe a little Coke could wash it down.

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.