Thursday, April 4, 2013


We made it through the long weekend without significant issues or changes. James remains as stable as possible. The long days in the ICU have become weeks and months. We are painfully aware of the passage of time (and the increasing risk of complications). We are forced to have end of life conversations of a different nature. James may not survive transplant. This is not the reality we chose to focus on, but it cannot ignore it either. 

There have been several transplants in the last week (including several lungs over the long weekend). We celebrate with our transplant "family" these incredible successes. We also feel the sadness of our wait.

James' days continue to be structured by physiotherapy. He is still able to do between five to seven minutes on the treadmill. He is improving in strength and endurance. He can now stand up with minimal assistance, and remain standing for a few minutes with support. He sits in a chair for four to five hours, and will dedicate time in the afternoons to more physiotherapy with arm and leg weights. I am incredibly proud of his commitment to his health. It is really impressive at this delicate stage. 

We have to really push ourselves to remain positive and focus on gratitude. This is a lot harder in practice, and is becoming harder as the wait continues to wear on our spirits. We need to believe transplant will be soon (without defining "soon"). 

What are we grateful for? 

We are grateful for access to universal health care. 
We are grateful for advances in medical science.
We are grateful that James is alive and awake. 
We are grateful that James can communicate.
We are grateful that James and I can laugh together.
We are grateful that James and I can smile together.
We are grateful for evening cuddles in James' hospital bed.
We are grateful for organ donation.
We are grateful for hope.

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