Saturday, November 9, 2013 10:00pm

ON THE EVE OF JOHN'S 70TH BIRTHDAY

Since my last post Friday morning, John has received the final two IVIG treatments through his central IV line.  It can cause flu-like symptoms of aching pain and that seems to have been the case today.  They have downgraded his pain medication, but the new RX seems to be working for him. He reports almost no pain from the amputation, but a lot of back pain - perhaps from lying down so long.

The acute care doctor did insert a tracheostomy yesterday afternoon with no problem.  It has been a great improvement for John to be hooked to the ventilator this way and no tube down his throat.  His vital signs continue to be good and he has stopped most IV medications.  Although he cannot speak, he tries very hard to say "yes" with his lower lip when communicating. There is no control over his tongue or mouth.  Moving almost any part of his body by himself was not possible yesterday, but today's tests by the neuro doctor and the physical therapist revealed some "firing" of nerve/muscle impulses which was encouraging, however tiny and slight!  Because every case of Guillian-Barre is different and John's case seems to be quite unique (and compounded by the previous infections and amputation) it is very hard to predict the course of the illness.

Yesterday Stephen brought the kids to the hospital and we all had lunch out together.  There is a family playroom and we enjoyed time there.  Ava was able to visit her grandpa and talk to him - she was very brave in such a new environment. 

Today was quiet for Paul, Elisa and me with John.  We worked on birthday party preparations and  Dee and Tom came up to help out.  But the big event was the physical therapists getting John to sit on the edge of his bed!  He was not able to help at all - not even his head - and these two women were amazing.  The therapist really pushed him through a few exercises and we saw some movement in a his right foot, left leg, and hands. When his blood pressure went too high, it was time for lying down and a good long nap - for John!  But the three of us were also exhausted from the tension of watching this "workout."

Enough for tonight - tomorrow is an important day.  I think there are over 125 birthday cards decorating that room!  And the balloons are coming!  Thanks to everyone for the cards, but more importantly for the prayers and the love.