Written September 7, 2010 9:06 pm

A conference was held with the Attending Neurologist this morning.  His diagnosis is that Anita is suffering from a case of Acute Disseminated Encephalomyelitis (ADEM), underlying cause unknown.  The report of the MRI performed on Sunday did not show any new lesion development or enhancement of existing lesions.  We are still awaiting the Myelin Basic Protein  (MBP) level results from the spinal fluid test, which will take another few days.  As previously noted, the results of the MRI test together with spinal fluid test results will confirm if the steroid/plasmapherisis treatment program has had/is having the desired effect.  Next treatment steps will be determined upon receipt of  Myelin Basic Protein (MBP) level results, i.e. continued high levels (indicating continued demyelinating activity) may require further drug treatment program (Cytoxan), lowered levels may result in continuation of the steroid treatment program to reduce lesion inflammation.  The tracheotomy bulb was temporarily adjusted today to check Anita's vocal chords, ability to speak, which proved positive, albeit her voice was somewhat weak/hoarse.  Anita's condition was also considered stable enough to move her from the Intensive care Unit (ICU) to a "Step Down" unit in the main hospital.  Anita visited briefly with family members in the afternoon and watched some TV in the morning and the evening, while resting for the rest of the day.

Communication. My Undergrad Degree is in Comm Arts.  I remember one of my professors talking about the complexity of speech.  The anatomy of the spoken word.  He got my attention when he orated, "Can you imagine eating spaghetti without your lips?" I would like to tag onto his lecture, Can you imagine a head full of thoughts, concerns, wishes, ideas straining to be heard, looking for a way out, but finding none. My lips work fine, but lip reading provides limited communication at best.

"We're going to adjust the bulb on your trach to check your vocal chords .  They may have suffered some trauma, so don't be alarmed if you can't speak." That scared me.  I already couldn't breathe or move on my own.  Now they were telling me I may not be able to talk.  Really?  John, the Respiratory Therapist and a few doctors were in the room when the kind therapist gently adjusted the tube coming out of my neck.  She has been my best cheerleader.  Always positive.  Always encouraging. "Try to say something."  I did.  "She sounds like Lauren Bacall!"  She was as happy as I was. I laughed.  I don't recall what I said, but I was relieved.  Grateful to have a voice. Talking was exhausting and the bulb was quickly adjusted back to its original position.  I was told it would be lowered periodically to allow me to talk.  Until then, I must corral my thoughts and pick and choose which ones get voiced.  Something else to do while I lie here.  Think of what to say first.  Now...for just a little while.

Written September 6, 2010 7:35 pm

Preliminary review of the results of the MRI performed on Sunday did not show any new lesion development or enhancement of existing lesions, which is positive.  The full MRI report will be available tomorrow.  The results of the MRI test together with spinal fluid test results (remaining results expected over the next days) will confirm if the steroid/plasmapherisis treatment program is having the desired effect.  The next treatment steps will be determined upon final review of these MRI and spinal fluid test results.  Anita watched some TV in the morning, visited briefly with family and rested for the remainder of the day.

There is an elephant in the room.  It has a long tube, like a trunk, attached to my trachea. The ventilator.  I give everyone and everything a nickname. Not this beast.  I wish I weren't so aware of it.  Frightening.  There are no words to fully describe a ventilator experience.  The air being forced into my lungs, keeping me alive, fills me with an angst, a terror I have never experienced before. The whooshing noise of the machine is not something that lures sleep.  It's a messy business.  There is suctioning that must be done often to keep my airway clear of mucous.  It's an arduous task performed by nurses or respiratory therapists.  The ventilator tube is removed and a sterile tube is pushed into my trachea causing a cough like gag, bringing up secretions, which are then suctioned out.  Nasty. The trachea itself houses a  plastic cannula that needs to be changed daily. This is not only scary, it's painful.  I'm not sure how it works.  I don't want to know.  I only write about it here, hoping I can wrap this memory up, tie it with a black bow and hide it in a corner of the attic.

Helpless.  Feeling a need to be suctioned to clear the airway.  It's the middle of the night.  No one is here.  I edge my right hand and stretch my fingers to find the call bell (a special pancake shaped device designed for those with limited dexterity).  "Can I help you?" Damn straight you can.  I can't talk, but I need some suctioning in here. Having a hard time breathing. "Can I help you?"  Another pause.  "Someone will be right there."  Each second seems like a minute, each minute, an eternity. Someone help me please.

I can't even cry.  I can't talk abut this to anyone but myself. The words roll around in my head like die in a cup. Thoughts start to form but they are suctioned out before they make a lot of sense. I stare at the Wash Hands sign for hours.  I wish I could scream.  I want the lights on.  I want the lights off.  Turn the TV off.  Change the channel.  Turn me. I'm not comfortable.  Can anyone hear me?  I'm scared. Really scared. I want to die.  I want to fight.  I need to fight. God help me. Please.  Keep me in this moment.  One second at a time.  That's all I can do right now....for just a little while.

Thanks for listening.

Written September 5, 2010  10:05 pm

The first results from the spinal fluid tests showed a decrease in White Cell count and Protein levels as compared to earlier spinal fluid tests.  These results together with a slight neurological improvement (i.e. strengthening in right arm, slight movement in left shoulder) was seen as positive by the Medical Team, and could indicate that antibody demyelinating activity (i.e. lesion development/enhancement) has ceased.  An MRI test was performed in the afternoon, of which results will be available tomorrow.  The results of the MRI test, together with spinal fluid test results (remaining results expected over the next two (2) days) will confirm if the steroid/plasmapherisis treatment program is having the desired effect.  The next treatment steps will be determined upon review of these MRI and spinal fluid test results.  Anita visited with family during the morning, but was quite tired in the afternoon after the MRI test and rested for the remainder of the day.

 In the dream I am walking barefoot across a meadow.  I have on long jeans and the cuffs tickle the tops of my feet as I climb the small hills in front of me.  Pebbles, like glass, dig into the soles of my feet.  Each stride causes pain.  I am late for something and as I run across the meadow I am keenly aware of the contrast between the cool, green grass and the hard dusty patches under my toes.  I call these my rock dreams.  I have them quite often. Always in a different location, yet each elicits the same feeling of walking barefoot. Each step causes a knee jerk of pain, walking like a chicken pecking at its feed.  I actually enjoy the dreams.  In them I can feel my feet, see myself upright and walking.  They give me hope.

Walking was my favorite activity before this illness.  Every morning, rain or shine, I would hook Trudy to her leash (after she pawed me at least 10 times during my first cup of coffee) and take off.  Nature was my muse.  I noticed everything.  Hawk feathers on the ground.  Through the fog, I heard the geese honking before they lowered their feet, skimming across the pond, causing a small wake.  Frost patterns, like icing, spread across the wooden slats on the bridges and on the edges of the path. Pieces of driftwood by the stream that ended up in my pocket if they were small enough.  Trees. Rocks.  A heron wading patiently through the water, searching for food.  I saw an owl once, resting in the hollow of a tree.  We gazed into each other's eyes.  It was a haunting experience.  I left it feeling like I had witnessed something I wasn't supposed to see.

Each day was different.  We didn't always go the same way.  We fought the wind, Trudy's ears flipping back, me pulling my hood up.  Other times, the rain would catch us by surprise.  Trudy would walk a few steps and shake the wetness from her fur.  I hunched my shoulders up to my ears, as if that would stop the rain from soaking me.  Walking in nature was how I cleared my head.  Nourished my soul.  Now I just have to visualize it, remember it, long for it.  Dream about it.  Now...for just a little while.

Written September 4, 2010  9:16 pm

A spinal tap procedure was performed this morning to obtain spinal fluid for various tests to check if the steroid/plasmapherisis treatment program is having the desired effect.  Results of these tests will be forthcoming over the next 2-3 days.  Anita also had a blood transfusion, due to low hemoglobin levels, considered a probable consequence of the plasmapherisis procedure.  Anita was quiet tired thereafter and rested for the remainder of the day.  The current plan is to continue with the daily steroid program, cease (or postpone) the plasmapherisis procedures, review the spinal fluid test results (next 2-3 days) and determine next steps at that juncture.

Spinal Tap.  It's not just the name of a band.  Having several residents perform this procedure while side lying in bed, tangled in ventilator tubes is anything but pleasant.  I felt no pain, but the position was getting more and more uncomfortable with each, "Are you ok Mrs. Crean?" and "Sorry this is taking so long."  The thought of a long needle being inserted into the spine to retrieve fluid is daunting.  So....be mindful. Try to think about puppies and marshmallows.  I remember mouthing "help me" to John who was sitting in a chair facing me.  He just looked stressed and helpless.

Tests.  I sure do have a lot of them.  These procedures break up the monotony  of a hospital day.  Not something that is always welcome on the agenda, but they do take time.  I remember hoping and praying that I would pass all these tests.  I prayed that I would advance my way out of this bed and onto Rehab.  But I stayed here.  Now...for just a little while.