Sunday, March 24, 2013

six weeks

The major challenge right now is remaining positive. James has been vomiting for three days with the increases to his feeds. The last episode of nausea and vomiting took almost two weeks to get under control. The cause of these episodes has never been known, but it is thought to be a pseudo-blockage in combination with severe delayed gastric emptying, and in relation to low lung function. James cannot handle any amount of volume in his digestive system. This was the reason for starting Total Parenteral Nutrition (TPN) a couple of months ago. TPN provides nutrition directly into James' bloodstream. The other feeds will be held for now, and most likely, re-started at a decreased rate.

James also had a very painful and uncomfortable bronchoscopy last week. The team took cultures from his lungs and have been able to confirm that James has another Pseudomonas infection. This provides an explanation for an increase in shortness of breath and thick secretions. James feels as though he is drowning in mucus. For the last few weeks, James has also been able to speak with a finger occlusion to his tracheostomy site. It has been wonderful to finally hear his voice again. Unfortunately, James is also finding it difficult to speak. He fears that the Bronchiolitis Obliterans will diminish his lung capacity, and he will either "drown in mucus" or "run out of air to breathe". These are very real fears, and I find it difficult to console, because I share the same fears. I know that James is as stable as possible, and I truly believe that the ECMO will keep him alive for transplant, but I suppose reason cannot always overcome emotion (especially in combination with stress and exhaustion).

We are finding it more and more difficult to find optimism for the future. James has now been in the hospital for three months (with six of those weeks in the ICU on life support). The ache and longing for home has become stronger with the changing of seasons. We had a dream of being back home in Victoria to nest together for the Spring in our lovely home. We only had six weeks together last summer before returning to Toronto for re-transplant. It was a very different six weeks than these last in the ICU.

We dream of our days together in the garden, and around the home with our feline friends. I would wake early in the mornings to weed before the sun (with the help and hinderance of our cats, of course). We would sip tea together in the courtyard, and James would share with me the beauty of Victoria. We would go to the beach between doctors appointments, and for late night hikes and bicycle rides after long days at the hospital. We didn't take a single day for granted, and truly made the most out of each and every day. I am grateful for the perspective, and James and I still value our time together more than anything else in the world. 

We felt as though those were the best and worst six weeks of our lives. We were truly living our best lives, but James' lung function was taking a sharp decline. We didn't believe that James had a lot of time left. We laughed and cried more than ever before. We never imagined that all this was possible. We had a very different dream.

We have now been back in Toronto for seven months. Our love and connection have grown in trial and strength, but the last six weeks have been wearing on our spirits. James has been living on the edge of death. He is being kept alive by machines with little to no quality of life. It is harder to laugh. It is harder to dream. It is harder to imagine something different. We have been each other's hope for the last few years. We have been each other's hope for the last few weeks. We desperately need a hope to hold onto, but it is not enough to love one another. 

We need a transplant. James needs a transplant.


  1. We agonize with you over the wait for a transplant. Sending our love and support,
    Susan and Carl

  2. I wish there was something a person could say to you right now that would make you feel more positive ,but there isn't. James is fighting the fight of his life and all we can do is hope and pray that his call comes quickly.He is an inspiration to all that know what is going on with him,Your place in Victoria sounds lovely.Know that God has his arms around James and is with you both. Some times even that is hard to believe but He is there with you. Stay strong xoxoxoDonna

  3. When you look back upon the place you have come from, realize the length of the journey must now be past half way and you are in fact, on the return leg.
    Hugs, Hope & Love
    Pamela & Carman

  4. Fingers crossed for a transplant very soon. Sending you many healing thoughts!