Hope Circling Round

Hello Family and Friends

We recently met with Mum's neurologist following a week of intense reading of medical articles where we attempted to learn everything we could about Mum's condition. Her neurologist admitted Mum to the General Hospital over 5 weeks ago, followed her case for the first couple of weeks, and met with us again having reviewed the detailed charting of her progress while she has been under the care of intensivists and a respiratory specialist.

Mum's condition has included all of  -- encephalitis  (acute inflammation of the brain);  meningitis (inflammation of the protective membranes covering the central nervous system), and myelitis (infection and swelling of the spinal cord). Her primary diagnosis is that of myelitis -- the rarest and the most devastating of the neurological syndrome conditions.  There are over 40 Saskatchewan residents with West Nile Neurological Syndrome and very few have myelitis.  Recovery from myelitis takes the longest of the three.

The neurologist has confirmed that Mum is making very slow improvement and he expects her improvement to continue in hospital and rehabilitation very very slowly over the next 6 months to a year.

So here's some more background....

How has Mum's neurological system been affected?  The virus has infected the lower motor neurons of the spinal cord (the anterior horn cells) resulting in a myelitis that is polio-like in the symptoms. Her breathing has been compromised and she has been dependent on a respirator to breathe for over a month although she is becoming less dependent each week.  She is also experiencing flaccidity (limpness) in her muscles.  

So what does that mean for the short-term?  The goal right now is for Mum to gain enough strength to no longer need the respirator to breathe.  Supportive care is very important so plenty of rest, good nutrition, and daily exercise are key to her gaining that strength.

So where do we find HOPE for these hard times? Mum's condition is very sobering and yet continues to be one of great hope.  She has survived six very difficult weeks of critical illness.  She continues to gain strength each day centimetre by centimetre.  Today during physio, she sat (almost on her own) on the edge of her bed for 10 minutes doing very simple foot and leg movements. Mum exercises her feet and legs much of the time that she is in bed.  In fact, we have had to encourage her to rest before the physios come!  As always, she continues to be keenly interested in your news and views. 

We bring HOPE into Mum's room every time we visit, and as we share your cards and letters.  The cheers of Mum's physiotherapists can be heard down the hall.  AND Mum also brings HOPE to us.  HOPE is circling around that room every day.

On Sunday, our families celebrated Janet's birthday with Mum in her room (and with carrot cake for all the staff on the ward).  We were a lively lot and we had to shut the doors so not to disturb the other patients.  Meg and John developed a list of questions to help the nurses communicate with Mum about her music and conversation interests.  And Mary and Josh decorated her room with four new pieces of art -- all done with fruit and flower smelly markers.  And as Mary said, "So now your room doesn't smell like 'hospital,' Grannie!"

In gratitude for Mum's continuing determination and fierce spirit, and your enduring support of all of us,

Janet, Nancy, and Catherine