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GBS. Getting Better Slowly.  Don’t expect regular updates to this blog with much news, as the days go by, not much happens.  today is a little different in that there is some good news.  If the journey starts with a rapid decline, a plateau period followed by the long, long recovery, the doctors tell us that she has progressed beyond the decline and plateau and we are now into recovery.  She is able to move her toes and has ever so slight movement in her thumbs and some fingers.  Best of all, she is breathing unaided.  But they are only shallow breathes and she doesn’t have the capacity to cough.  To come off the ventilator too early brings as many risks as staying on it.  The decision to do the tracheotomy has been put off to early next week.  She is on the books with the ENT consultants awaiting an available slot.

The GBS Support Group sent a new communication card today.  So much easier and faster than the abacus alphabet board we’ve been using to-date.  They also sent a copy of the book Bed Number Ten which has been compulsive reading.  It describes the hell that a patient with GBS goes through.  The worst part of the narrative is the care from the nurses. Some dreadful tales abound. That’s not the case here.  In Jennie’s case the nurses have been wonderful. It is difficult to fault the NHS.


Imagine being unable to move, you open your eyes and they are fixated on the same whitewashed ceiling.  In the peripheral vision there are The Machines.  Monitors and the ventilator on the right hand side, the console of automated drug dispensers on the left hand side.  Imagine not knowing really what is going on.  Worse, imagine people talking about you as though you are not there.  As a nurse, when you are in ICU and around people in comas it is easy to forget that Jennie is completely alert, her mind is active.  She is alive, trapped in a disabled body.


July 2009
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