update (from my bed)

I have written before about the failures of language in attempts to articulate my love for James. It is also seems impossible to describe these intense emotional experiences of living on the edge of life and death. I have written about the endlessness of this waiting process, and the daunting uncertainties about the future. I have written about the overwhelming feelings of sadness and fear; a strange grieving process and a letting go, I suppose. I aim for catharsis in my writings, but I often feel short of words. It is not enough. It doesn't change the circumstance. There is always that sense of helplessness. I know that I need to focus on that which is within my control, but it doesn't come easily to me. I still feel lost in the unknowns. 

We no longer have an ebb and flow to our days. The days are structured by numbers that determine movement and change. It is as though James has become an object in a world of medicalization. I find some comforts in knowing the details of his medical status, but it can also be very painful. I am keenly aware of the extent of his illness. This will not be an easy or simple path to recovery and health. 

James' medical status is largely the same. There remain some serious concerns. We hope for improvement in the coming days, but James' complications are complex and on-going. The team can offer supportive care in all regards, but treatment options are limited to some extent. James has developed a very high tolerance to a lot of the analgesic and sedative medications. This creates a barrier to treatment and an additional layer of complication in finding the right balance and combination of medications for James' comfort and pain. There are also a lot of contradictions to consider, and James' kidney and liver status create another challenge in preventing further deterioration and decline.

The most recent development is possible sepsis. James developed a high fever overnight along with a spike in his white blood cell count. We are still waiting for blood and urine cultures to confirm this possible infection. He also had another bronchoscopy this afternoon to collect further cultures from his lungs (in the event that there is another source of infection). 

Unfortunately, I have been in bed for most of the afternoon in escape from light and sound. I suspect this migraine is a response to the stress of the morning at the hospital (and an accumulation of the last week of distress). James was awake for the first time in days (despite very high levels of sedation), but his presentation was of pain and discomfort. It is difficult to differentiate between moments of delirium, and moments of definite lucidity. He pleads with me, wide-eyed, in desperation and pain, and then disappears into an unresponsive state of being, eyes glazed-over, and grasping aimlessly into space.

I am fortunate that there are also endearing gestures of sweetness. James recognizes the sound of my voice, and a beautiful smile will make an appearance. My heart aches as James reaches out for me, squeezes my hand, and asks for kisses. I find a lot of reassurance in these moments. I miss these moments in his days of deep sedation. I need these daily reminders that James is still present. James is still here. James will continue to be here.

complications

These words are difficult to write. I want to communicate a message of hope, but I don't want to create a false pretense. That is, I want to be able to share an honest perspective, but I also strive to maintain a positive resolve. There is and will always be a precious balance. There are a lot of details to share, but I will mostly focus on the larger elements.

James' edema is a significant concern. This accumulation of fluid has a negative impact on his respiratory system (in addition to the function and regulation of his other major body systems). James' fluid balance continues to increase. There are challenges to the process of duiresis for a number of different reasons. James' creatine levels have been steadily increasing to the extent of renal dysfunction, or in the least, it is an indication of the potential for renal dysfunction and failure. This creates a barrier to intervention for duiresis.

Similarly, James' has been demonstrating signs of liver toxicity and liver dysfunction. He has had on-going and serious episodes of myoclonic muscle spasms, along with frightening episodes of delirium and hallucinations. It would be painful to even make an attempt at describing these episodes. There are no words to describe the distress. There have been several changes to James' medication in hopes of a positive improvement in all regards.

Finally, James' lungs present with the appearance of Primary Graft Dysfunction. According to my understanding, Primary Graft Dysfunction is a form of injury to the lungs (rather than a form rejection). This can be the result of the length of transition period during the operation, in addition to other recipient and donor factors. Of course, James is a rare case. It is difficult to make comparisons for a re-transplant patient on ECMO pre-transplant.

We have hope that James will continue to move forward. We expect these challenges along with the need realistic expectations, but I am also not ready to let go of fears for the future. James has incredible amount of fight and determination. His motivation and drive to survive will be his strength in the coming weeks.

Thank you (again and again). 

Love.

Love.

Love.