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Concerned Citizen and a Serial Entrepreneur wrapped in a progressive democratic soul longing for us all to get along.

Wednesday, August 13, 2014

Today is Wednesday, August 13th

Happy Anniversary Gary & Deb!!!  15 years ago we celebrated in Ct.  We toast to another year!!

Meanwhile our family has rallied around T & I.  I haven't been alone at night... John & Shar, Jayne, Carla, Deanna & Gary, Gar & Deb have kept me company and they take turns staying with me.  I've lost track of time...

Tracy was admitted on July 16th for what we thought would be a few days of IV feeding to allow his GI tract to heal.  Escape to Paso, return to daily care and feeding, walking & cleansing of my T and then, everything seemed to go sideways.  As I was getting ready to make the trek to see T one Sat. morning;  the charge nurse called me to say T's heart had developed arrhythmia during the night and there'd been an 'event'.  T was now in an intermediate ICU for monitoring.   I hung up, sped to Stanford and called the troops. Scared.  Upon arrival, I was greeted by an ICU doctor who proceeded to relate in great detail what she'd done to save T as I slid down the wall in tears, saying stop, please, I can't process this.  Gary Reed arrived to gather me up and Carla & Jayne came soon after... Gary & Carla accompanied me on every meeting with the docs that day as I tried to cope and understand.... our T's liver had been ravaged by chemo and there was no return.... we told our story and the docs heard what a special man our T was... we hoped for peace.

Since then, we've had lots of struggles.... we've disagreed over whether T understands his plight and one day after 4 different docs insisted that we inform T that he was dying- I had a meltdown and threatened to call my attorney ( I don't have one ) if they persisted... I only want peace for T.... Turns out they hadn't been able to find T's health directive so, that was the reason for their insistence on speaking to T about his present state.  Finally past that one...

Next came T's not wanting to be touched.  He'd endured the constant moving, adjustments, jostling and cleansing for weeks and then, he very politely refused to be cleaned.  Totally out of character except that it was T's last vestige of control.   He's been a valiant warrior and because he's been so quietly accepting of the pain throughout this interminable 4 year process;  he continued to accept pain without protest.  Now he just wanted to be left alone.  Finally,  he admitted that the sheets even hurt his skin and Andrew, the head of the BMT team, was able to convince him to accept a pain medication - morphine.  He's been coasting since...

Music has sustained us and T's loved being serenaded by the hospital harpist and guitarist and Gar .... I've been able to sing to him at times... sometimes even without the tears.

Now we're making end of life decisions... T had decided 4 years ago to give his body to Stanford upon his passing.   Now the ? has arisen as to whom should receive his body.  The School of Anatomy ( I keep wanting to say autonomy ) or BMT.  Last night I made my decision.

 T's hung on longer than the BMT team expected but then, they really never knew our T.... did they?
I keep telling him his Courtney will be back on Thurs...

1 comment:

  1. You are very brave, the walk you are walking is very difficult...ALL my love to you and Tracy and the army of hands that are holding you both!