Written August 30, 2010  8:58 pm

Anita slept through the night breathing with the aid of the ventilator.  Upon review of her status in the morning, it was determined that the steroid treatment program was not having the desired effect on completely eliminating the antibody activity (i.e. demyelinating lesion activity in her brain and spine), as evidenced by her clinical neurology, i.e. movement, sensation, ability to breathe, etc.  The medical team discussed the status with Anita and the family, and it was collectively decided to pursue a plasmapheresis procedure/program ("blood filtering", removal of antibodies from plasma) which is planned to be performed over the next three (3) days. The plasmapheresis procedure/program will start tomorrow morning.  Additionally it was decided to remove the ventilator tube (inserted through her mouth) and perform a tracheotomy procedure (insert breathing tube into the trachea), as well as a PEG procedure (insert feeding tube in the stomach).  The tracheotomy and PEG procedure will be performed tomorrow afternoon.  The steroid treatment program continued through today.  Anita visited with various family members for short periods of time in the afternoon and watched some TV.  Anita's will remains strong, and the hope is that the plasmapherisis procedure/program will set her on the path to recovery. 

It was the Civil War era.  I think.  I was wearing a long muslin skirt and a dirty scarf tied my hair back from my face.  I dreamed I was a stowaway on a river boat in New Orleans.  I was afraid of being caught, well aware that I was not supposed to be there.  There was a black horse tied to a metal ring in a straw lined stall on the boat.  He was large, quite a presence, and I knew he was important.  His bridle was lined with small brass discs and ruby jewels.  He snorted and pawed at the floor with his front leg, bowing his head in time.  When his hoof struck the floor it sounded like a muffled tambourine.  He stomped with a steady, driving rhythm. 

It was a disturbing dream.  I felt I had done something wrong.  The ventilator rattled its own cadence.  The priest told me, "These things happen.  We don't know why." Chaos.  My world was shrouded by foggy thoughts, fearful dreams.  Scared.  Confusion.  Darkness.  What's real? I prayed.  I slept. I dreamed.  I was unable to hold onto a thought.  Spiraling down, reaching out to grab a thread of reality. But it was slipping through my hands.  My world was unraveling.  I had to keep fighting, but for what?  Why?  Something was pushing/pulling me.  Let go, let God.

Written August 29, 2010  8:39 pm

Anita again slept through the night breathing with the aid of the ventilator.  Chest PT was performed during the night to assist with lung function, i.e. insure no build-up of secretions.  Steroid treatment program (2 doses) was continued today.  Anita rested during the morning, and visited with various family members for short periods in the afternoon.  Anita spent most of the day/evening breathing over the ventilator (i.e. ventilator assistance set at a low level), while maintaining appropriate CO2 levels.   The ventilator assistance level will be raised overnight to allow her to rest and sleep.  It is planned to continue with the ventilator weaning process in the morning.

There was a dry erase board on the wall near the window in my room. It was updated each shift with the name of the nurse assisting with my care.  An aid would waltz in, erase the current name, pull a marker out of her scrub pocket and fill in the blank following the semi colon.  Nurse:     
Observing this became an event for me.  What color will the marker be today?  Will the whole board get erased and then made anew with the aid's personal flair?  Will they leave a message?  A smiley face?  But the most pertinent question was, who will my nurse be?

There was one name I especially looked forward to seeing.  I'll call her Nurse "A".  When her name appeared I would have done a fist bump, a happy dance if I could.  She was such a caring individual.  She moved my stiff swollen limbs through their full range of motion and made sure to turn me every two hours.  She kept me informed of all medications and what they were for as she hung bags on my IV pole.  But she was more than just a nurse.  She told me about her family, her dreams for the future.  She was so relaxed, never rushed.  A slice of normal in this sterile, antiseptic environment.  The conversation was decidedly one sided but never the less it flowed.  I could only nod my head in response, but somehow she new what I was thinking, feeling.  She sensed when I was uncomfortable.  She asked about my family.  She was my friend.  We even shared a few laughs.  Sometimes when it was slow, she would offer to shave my legs or wash my hair.  I get teary when I think of the kindness she showed me.  One of the few faces that relayed peace and hope to me in the sea of helpless confused faces surrounding me.

Nurse "A" saw beyond the ventilator, IVs, catheters and my puffed up body.  She saw me.  She acknowledged my life.  I cook dinner, worry about my kids, take vacations, volunteer with the PTA.  Never condescending, she conveyed her friendship through her comfort level with me and my machines.  She looked at me with genuine accord, not worry or concern.  I wished I could go grab a cup of coffee, or better yet, a Coke with her and really talk.

It's easy for the infirm to get swallowed up in the chaos of hospital rooms, machines, medicines, tests and needles.  Thank God for people like Nurse "A" to soften the edges, make it bearable.  She has chosen to do what she loves and it shows.  I wished I could put her name on that dry erase board in permanent marker.  Thank you Nurse "A".  You saved my life.

Written August 28, 2010  9:12 pm

Anita slept through the night breathing with the aid of a ventilator.  Chest PT was performed during the night to assist with lung function, i.e. insure no build-up of secretions.  An MRI of the spinal cortex was performed during the morning.  Review of MRI results revealed no further lesion development or enhancement in the spinal cortex, but did show additional lesion activity in the upper part of the brain.  A one day steroid treatment program (2 doses) will be administered this evening/tonight.  Anita spent 3 hours this evening breathing "over" the ventilator (i.e. ventilator assistance set at low level), while maintaining appropriate CO2 levels.  It is planned to continue with the ventilator weaning process in the morning.

Definitive diagnosis of the underlying disease (currently points to an aggressive version of MS, or disease akin to MS) is not yet known, and may not be for another month or so due to the need for additional testing at varying intervals in the coming weeks. Anita is currently able to move her right arm/hand, and shows some movement in her right foot.  She responds to verbal commands and acknowledges family members as they visit, but is limited in her ability to verbally communicate due to the ventilator tube.  Her will remains strong, and the hope is that she can be weaned off the ventilator, leave ICU and enter Rehab in the coming week.  The family continues to pray for a  full recovery while recognizing that the healing process may take several months.  We thank you for all the support, prayers and good wishes that you have shown our family during this difficult time, and ask that you continue to keep Anita in your thoughts and prayers.  

MS.  Two random letters in the alphabet.  I am familiar with medical terms and abbreviations.  Most professions have their own lingo, allowing for more precise communication.  In John's work ST stands for Steam Turbine, in mine, Speech Therapist.  I am an Occupational Therapist (OT) and I know a little about MS.  I remember when John shared with me that the docs were tossing the MS diagnosis on the table.  "No way.  I am too old.  It hit way too hard and fast!"  But I couldn't talk, so once again I had to just nod my head to show comprehension.  I've seen the struggles patients with MS have.  As a therapist and a friend I have witnessed the decline.  I have watched it's effect on friendships and families as independence is gnawed away until it is lost.  I know not everyone with MS follows this path, but many do.  I'm already on a ventilator! What chance do I have?

I remember wanting this nightmare to be over.  I just wanted it to end.  Any outcome.  As long as I didn't have to endure this anymore.  I really thought I was dying.  I wasn't afraid.  Death offered me a sense of peace.  But then I thought about my boys.  My own Mom who is here, staying at my house, helping my family get through each day.  John, who is the sentry at my bedside.  Trudy, my faithful canine friend, waiting patiently for me at home.  I need to be here for them.  My boys. I desperately want to be there as they journey into adulthood.  I want to see them transition into the grown-up world and remind them to bring their child selves along.  I need to be here for my mom.  I can't let her lose a child.  I want to express my thanks to her for giving my free spirit plenty of room and nurturing as I grew up.  I've got to hang on.  I will find my peace here.  I wrap myself in white wings, close my eyes and pray for peace, patience and another day.

Written August 27, 2010  9:05 pm

Anita slept through the night breathing spontaneously on her own, with the ventilator connected as backup.  She was somewhat restless in her sleep, and in the morning spiked a fever.  In addition, she showed elevated CO2 and sugar levels, and was very fatigued.  She was administered with a insulin dose to lower her blood sugars, which are a residual impact of the steroid treatment.  She was put on antibiotics to combat a potential lung infection and was put back on the ventilator, to allow her CO2 levels to decrease and for her to get some rest.  Her fever decreased and she slept through the morning/early afternoon.  She perked up in the afternoon and had a round of OT, a visit with son and watched Oprah. She also read some cards and Guest Book wishes, and again requested a Coke!!  She is currently resting and will pass the night breathing with the aid of the ventilator.

I don't remember much from this time.  I do remember wanting a Coke, visits from friends and family and John being there a lot. Here is a part I do remember.....

There is a doctor, a resident, who comes every single morning.  He arrives before the rest of the hospital wakes up.  The hallways are quiet and he always knocks before he enters.  I wonder if he ever gets a day off.  He starts our one sided conversation the same each morning. "Good morning Mrs. Crean."  I keep my eyes closed.  He gently pushes on my arm.  "Mrs. Crean?  Mrs. Crean?"  I open my eyes.  He smiles and rolls the covers up from the bottom of the bed exposing my naked feet.  "Can you feel this?"  He grabs each of my big toes, one at a time. "Can you wiggle your toes?"  I think I smile at him, trying to be polite, but I shake my head side to side in response to his question.  "Are you in any pain?" "Do you need anything?"  I want to say in return, I need a Coke.  I need to breathe, sit-up, talk, eat and walk.  I need to go home to my boys.  The oldest is a senior this year.  He's applying to colleges, finishing up an Eagle Scout project.  The youngest is a junior.  Bright, sensitive kid with his future before him.  Important stuff!  I should be there.  But I just look at this young resident who is not that much older than my boys.  He writes something on his clipboard and squeezes my foot in farewell.

I know he is a student.  I could set my watch by his am greeting each day.  He's prompt, courteous, brief, even when no one is watching him.  I wish he would tell me what he writes on that clipboard or just give me an encouraging word.  He seems stressed.  Medicine is not an exact science.  Not for him and certainly not for me.  His lab coat is always starched and ironed with virgin pens peeking out of the breast pocket.  No teeth marks on them.

I'm sure I'm not a priority patient.  Stable.  Critical.  No change.  Check on her everyday.  Maybe adjust her meds.  Answer her husband's laundry list of questions.  Click the pen, pocket it, and move on.  The staff here is excellent.  I have plenty of time with nothing to do but study them.  I am one of many to them, but to me they are one piece of a small but complex puzzle that is my life.  I am the largest piece struggling to figure out where I fit.  How do I begin to understand this?  Every time my brain starts to grasp a piece of this concept.....I fall asleep.  Again.