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.