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.

Written August 21, 2010  9:00 pm

Saturday was a good day.  Anita again slept peacefully through the night.  Sedation was lowered during the morning, and she met with the Neurologist and his team, as well as with many family members.  She was alert and in good spirits, lots of "thumbs up"!!!  A preliminary weaning off the ventilator was attempted for a period of time.  However, she tired and the ventilator intervention was returned.  An MRI of the brain and spinal cortex was performed in the afternoon.  Preliminary review revealed no further lesion development or enhancement in the spinal cortex, which is good news.  Sedation was increased for the MRI and she will remain on the higher level of sedation thru the night.  Anita and her family thank you and are humbled by the outpouring of support.

I remember the 17 mile bike ride on the Virginia Creeper Trail.  The weather was warm and clear.  The bike path was beautiful as it wound down the mountain.  I recollect thinking about how the boys, who were at the Philmont Scout Ranch in New Mexico, would enjoy this.  Maybe we could do a family trip in the fall and enjoy the foliage on the trail. The sound of the gravel crunching under my tires, the water in the stream flowing beside me, and the sunlight cutting through the trees made for a perfect ride.  What a feeling of freedom! To finish the trail, return the rented bike and then on to sip port at the Martha Washington Inn.  That's living large in my book!

Just a few days later, I wound up sipping a coke while sitting in a recliner in a hospital. Things get fuzzy for me after the first hospital, but to "wake up" in another hospital, attached to a ventilator, with movement only in my right hand is frightening to say the least.  I couldn't talk.  I couldn't ask questions.  I could here perfectly fine, but all I was hearing was "you will be ok", "we're going to run this test", "we're going to reposition you, "we're going to suction you."  We was the operative word.  In a teaching hospital there is no "I", only "we".  We was easier for me than "you".  "Can you move your feet?" "Can you move your fingers?"  "Can you breathe on your own?"  I could only try and shake my head no.

How was I supposed to understand this, when no one in the circus of white coats and scrubs could take out the megaphone and hawk out, "welcome to Neuro ICU.  Step right up and witness a medical mystery.  See the lady crash in the MRI.  Watch her friends and family try to lip read her requests.  Watch her watching us watching her.  Just one more test.  One more procedure.  I am sure we will figure it out!"

Thank God for my husband John.  He was my constant.  My touchstone.  I watched the clock every morning awaiting his arrival.  His smiling face couldn't mask the concern I saw in his eyes.  "You're going to be fine," was more of a command than a statement that he made several times a day.  I was scared.  I needed him.  I wanted him to crawl into bed with me, unhook the ventilator, and hold me back to the way it used to be.  But I could just look at him and listen.  And nod my head.

Nights were the scariest.  The sound from the ventilator was louder at night.  A constant reminder of its hold on me.  It was hard to sleep.  Sleep brought vivid, frightening dreams.  It was dark.  I was alone.  I would visualize myself being cradled in angel's wings.  Huge white feathers cocooning around me.  This brought me comfort to help me through another night.  To hold me until the morning light. I would close my eyes and visualize walking the dog, riding my bike, sitting on the beach with John and the boys.  I would imagine climbing a hill, feeling my muscles working, feeling the physical drain of pushing myself to fatigue.  These images and the angel wings protected me from my dark reality as I found my way to a place where sleep was an escape.  A comfort.
Happy Birthday John!

Written August 20, 2010 9:00pm
Anita slept peacefully through Thursday night while sedated. It is planned to get her back on a more normal sleep pattern, i.e. sleep at night, more awake during the day over time. Anita had her first round of Occupational Therapy (OT)/ Physical Therapy (PT) this morning. She sat up on the edge of the bed, and gave a “thumbs up” to all present. I guess she approves of the PT and the OT in particular!!! Later in the morning, another lumbar puncture (spinal tap) was performed to obtain fluid for various tests. She had the last dosage of the steroid program on Friday afternoon. Results of a serum test for the presence of Neuro Myelitis Optica (NMO) antibodies came back negative. Accordingly, her exact diagnosis remains unknown, however still points to MS or a disease akin to an aggressive version of MS. 

I remember signing the will. My friend had to help me lift my right hand. It’s ironic we had just had the papers drawn up a few weeks before my hospitalization. We finally initiated the will because we didn’t have to choose a guardian for our children. They were of age now so the process was simpler. If trust funds and end of life decisions can be regarded as easy, the time was ripe. Little did we know I would be knocking on that door just a short time after the paper work was completed. The lawyer came to the hospital to witness my signature. There were balloons tied to the bed, lending a rather festive atmosphere to the occasion. That’s the last thing I recall from that particular room. The sun shining through the window, the room so bright that no overhead lights were needed. Signing those papers. Not thinking that it might be my last good effort at independence.

 I don’t remember the frantic ambulance ride to the local, large teaching hospital. I don’t remember being intubated. “There’s been a lot of bleeding due to the steroids.” “She will need a transfusion.” “We’re going to put her in twilight sleep.” Were they talking about me!? I remember my cousin hanging a Happy Birthday banner on the wall, telling me, “Everything will be ok, just have faith.” I remember lots of white lab jackets, an entourage around my bed. I couldn’t think straight. Thoughts rolled in and out my head like minnows through a fishing net. I couldn’t hold onto a thought long enough to process it. I couldn’t stay awake. I had to trust whoever was holding the net. I needed someone else to be in charge.

The dreams I had were so vivid. I know they were just dreams but they have stayed with me as if they just visited last night. I was in a hammock in a covered outdoor picnic shelter. There was a granddaddy long leg spider the size of a minivan bouncing a ball beside me. She (I know it was a she because of her eyelashes and voice) was telling me “they” want to put you in twilight sleep. I felt a primal fear while swinging in that hammock. Not of the spider, but of my situation. I wanted “them” to leave me alone. I tried to scream, “Noooooo!” but I couldn’t. The spider assured me, “all will be ok. Don’t fight.” But I did fight and I’ve been fighting ever since.