Isabel's Ride-abouts

Dear Family and Friends

This week has been a good one!

One good day has stretched into two and now to eight.  Mum has been regularly "off the respirator" for up to six hours at a time for five consecutive days.  This means that the respirator is shut off for six hours a day and Mum breathes on her own with only a trach mask of humidity and some oxygen.  For the remaining 18 hours a day, Mum breathes primarily on her own with the respirator providing "some puffs of air" to expand her lungs.  While off the respirator and with some support of oxygen and humidity through the trach mask, Mum has managed physiotherapy which has included range of motion movements in bed, sitting on the side of her bed for up to 10 minutes, standing with help, and sitting in her chair for up to three hours.  For someone who has been in bed and dependent on a respirator to breathe for 2.5 months, this is progress!

This week, Mum's dynamo lead cheerleader physiotherapist returned from holidays, took one session to assess Mum's progress, and declared her breathing to be stable enough to go for a "ride-about" around the ward.  So Mum was able with the support of oxygen to leave "the four walls" of her room and take a wheelchair trip courtesy of the two physios who pushed her around the ward.  Nurses from all over the ward cheered "YEA, ISABEL!!!" as she sailed by.

While on the ride-about, Mum was able to greet the other West Nile Virus Neurological Syndrome patient at her door with a "thumbs-up".  The other woman waved back to cheer on Mum!  It was a moving moment!  Mum has been very interested in the stories of other WNVNS survivors but this was the first in-person "meet and greet".

Although we continue to live with the sobering reality of Mum's debilitating fatigue, inability to speak, and severely compromised muscular and neurological systems, we are grateful for these consistently positive eight days.  Despite the phenomenal fatigue that is common to all WNVNS patients, Mum sleeps little during the day.  Thus your letters and cards and phone calls continue to be essential to her well-being.  Connections with Mum's wide community are so important to sustain us ALL during the long hospital days.

Each week, we receive messages from Mum's broad community of friends from the many different decades of her life.  New people call and write as news continues to spread of her illness and recovery.  We continue to be amazed by Mum's sphere of influence, and she --  and we --  are so grateful that you take time to phone and write.

In gratitude and hope, as ever,

Janet, Nancy, and Catherine