Thursday, June 27, 2013


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.

1 comment:

  1. In some ways James is at a point where progress is noticed in hind sight and not in quantifiable leaps each day. This is still progress. The way the two of you work together to accomplish a semblance of normal in the ICU is so encouraging to others facing their own challenges. You continue to not just positively affect those around you, but make us stand back in awe.
    A prayer for deep and restful sleep for you both; a weekend off that is filled with moments of looking back and celebrating how far you've moved in the last 6 months; laughter at what seemed like big hairy deals at the time but now seem inconsequential; joy in each other's company and always, courage to take the next step.
    Happy Canada Day Weekend, love & hugs