updates and ramblings of sorts

I want to write a positive post. I want there to be something to write about. There are not a lot changes from day to day. There are hard days, and harder days. We are both completely exhausted. We sleep a lot of the time. Sleep offers a reprieve from an almost constant anguish. We long for a future together, or in the least, an existence outside of this institution. It is not easy to laugh and smile. We try to fill the hours. We try to fill the empty space. There remains an endlessness to it all. 

We made it through the long weekend without complications. James will hopefully start to feel an improvement with this recent rounds of antibiotics. We have been making an attempt to follow a routine to structure our days and pass the time. This has been more difficult with James' level of fatigue and malaise.

James was not able to do a lot of physiotherapy last week, but he is determined to get back on track. We hope to start the week with a walk in the halls (rather than the treadmill), but that is completely dependent on the availability of staffing resources. It takes a team to movie all of James' equipment, and policy requires the presence of two perfusionists. Regardless, James will start the day with some movement. He does not want to deteriorate in physical strength, because it will be essential for his recovery post-transplant.

It has also been another month since James' tracheostomy site has been changed. These changes have been very painful and uncomfortable, and often result in a lot of bleeding, because of the Heparin (to prevent clotting in the ECMO circuit). James was sedated for the last procedure to prevent the immediate discomfort of the change. This led to a decrease in respiratory rate. James stopped breathing, and was forced back on a ventilator. He found it very distressing to wake on the ventilator, but there is not a preferable alternative. 

Once again, James and I feel trapped in the realities of the ICU. We must find a way to continue to move forward. It is hard to focus on the day to day, but there always one hour to the next. We find our strength in our love for one another. We will not allow desperation to weaken this bond, but rather, James and I grow closer in crisis. It becomes our resolve to continue to fight for survival.