update

I am trying to process a lot of difficult and conflicting emotions. James continues to move forward, but at a pace that lends itself to discouragement. I am acutely aware of the challenges ahead, and the length of time it will take to get there. The progress is remarkable in consideration of the last six months, but it is starting to feel endless again. We still have a long way to go. Movement is slowing down a lot. It can feel as though our lives are on hold again. The walls are no longer closing in on us, but James need the benefits of time. We are going to have to remain still for a while.

Where are we? James is able to remain off the ventilator (and on a tracheostomy mask at 30% oxygen) for ten hours during the day. We will increase to twelve hours on Friday. At that point, James will be given the weekend to rest. He still requires ventilation on high pressure control for physiotherapy and at night. James is not able to breathe on his own during deep sleep. There could be a number of reasons for this, including James' medication regime. The team is hesitant to push forward, because James' success during the days is dependent on his ability to sleep through the night. He needs to feel strong during the day to be able to participate physiotherapy. This is essential for progress in all regards. 

In terms of physiotherapy, James is walking further some days, and feeling stronger all the time. He is now able to get out of bed with minimal support. He can also stand independent of support. These are strenuous movements, and James finds himself short of breath. Nevertheless, James is gaining back his autonomy on several different levels. This all makes a significant difference in terms of James quality of life in the ICU. 

We had another scare on Wednesday followed by a miserable procedure. James had cultures done on his central line. The results came back positive for a pathogen. James was asymptomatic for sepsis, but the line would have to be removed as soon as possible to prevent the spread of infection.

There were three unsuccessful attempts at the insertion of a new central line. James cried in excruciating pain throughout the procedure. I held his hand, and whispered words of reassurance and encouragement. James hates needles after a childhood of pokes and prods. This was absolute torture for him. James finally agreed to a PICC line insertion in his arm. He was given time to rest followed by another procedure of painful anticipation. This was successful, and James' infected line was removed late in the evening. We both went to sleep in a state of complete exhaustion. 

We have to find a way to remain positive. We have to remind ourselves that James will continue to improve. We will eventually have lives separate from illness and hospitals. We have to hold still, and hold each other close. We will get through all of this.

heroics

Heroics. That is the word for all this. James is a hero. He is making enormous strides. He keeps pushing forward. His courage is unbelievable. I tried to express my deep admiration, and I found myself in tears. Words are completely inadequate here. I am so proud to be his wife.

James has been walking the entire unit in the mornings, followed by independent arm weights, leg weights, and standing stretches in the afternoon. He has a very strong sense of motivation, along with a very real determination and drive that makes an incredible difference. (We all already know this about James. His pre-transplant days were a testament to it).

James' improvements are evident on all levels with a promise of future health and benefit. The most essential (and remarkable) change has been in James' respiratory system. His hard work has made for steady weaning from the ventilator. This can often be a very long process with a lot of back and forth movement between the various stages. James has been on minimal support for the last twenty four hours (and for twelve hours on previous days). This afternoon, James will make an attempt at a spontaneous breathing trial. That is, James will breath completely independent on the machine (with oxygen support). It will be a short trial of a couple of minutes followed by longer trials in the coming days. It is all part of the process.

Another major area of change has been with James' gastrointestinal system. James has a long-standing history of nausea and vomiting episodes as a result of severe dysmotility, delayed gastric emptying, and pseudo-blockages. He has not been able to tolerate entereal feeds (or anything by mouth) for the last six months. He has received his nutrition directly into his veins through Total Parenteral Nutrition (TPN), in addition to trickle feeds to preserve the function of his digestive system. Unfortunately, TPN has been known to cause infections and sepsis over the long-term. A major hurdle for James will be developing a tolerance for feeds. James will not be able to eat or drink with his tracheostomy, but at some point, James will need to slowly re-introduce liquids and solids. He will also need to regain strength in his swallowing muscles. This will be a major goal for eventual discharge from the hospital.

We can expect a difficult and slow process, but James is braving the very early steps of weaning from the TPN, and increasing his nasogastric feeds. He follows a strict bowel routine to encourage digestive motility and prevent bowel blockages. Nevertheless, James continues to face daily nausea and vomiting episodes. He is pushing through the discomfort with incremental changes to his digestive routine. This is a remarkable feat.

I wish I could convey the magnitude of these steps forward. We are right on track with forward motion (right out of the ICU). We move with cautious optimism and a weary knowledge of potential challenges. James can also be hesitant at the speed of this pace, but I sense confidence and readiness in his movement. Everything feels possible all over again.