We have no point of reference for comparison. We have been told that James is the first re-transplant patient to survive on ECMO for three months as a bridge to transplant. Each of these factors alone would come with expectations of a long and complicated recovery process.
I wish I had more of a sense of the future possibilities. I wish I had more of a sense of James' prognosis. I know the statistics, but James and I have always been outliers. We want to believe that this transplant will be different. We want to defy chance.
James is doing everything within his abilities to move forward. He is pushing himself to the point of exhaustion. He is doing everything right (and everything possible). He has been achieving all of his goals for weaning from mechanical ventilation. The ICU team has created a regimen for daily incremental increases to the length of time on low levels of pressure support. We even have a sticker chart for motivation.
The days can be long, but we find hope in the small changes that indicate progress on a daily basis. We are so grateful to be on the other side of transplant. That is enough to continue to propel forward movement. We are both in good spirits. There are regular frustrations and moments of discouragement, but dreams of a future together are enough to lift the weight. We still have fears and anxieties, but again, James and I are able shift our focus, and find that same sense of hope that was essential for pre-transplant survival.
We have learned out of necessity to live in the moment. We have the knowledge and experience to understand that everything can change in an instant. We dabble in those post-transplant euphoric feelings of joy and relief with acceptance for the moment, and a letting go of anything beyond the moment. Does that make sense? We have no alternative. We only have the moment.