Sunday, January 27, 2013

morning nausea

It is Sunday morning, and I am watching James try to sleep away the nausea. He is making an attempt to fall asleep to the background noise of snoring on one side, and blaring television and concerning cough across the room. These are the wonders and joys of a ward room. 

Nausea always bring disappointment, but it doesn't negate the accomplishments of the previous days. It was a wonderful week of small improvements. These gains are essential in the face of possible deterioration. The fear is always there; lung disease is notoriously progressive. Even the smallest of movements towards improvements in health status warrant recognition and celebration. James has been able to eat solid foods for the last few days, take several walks each day (without oxygen), and has been gradually gaining weight. These accomplishments lift our spirits. James' misery at a long-term hospitalization has been replaced with a sense of hope for a second transplant. 

We have now surpassed James' post-transplant hospitalization in length. It has been over a month in the hospital. The complications in securing funding for James' Total Parenteral Nutrition (TPN) feedings remain. There are a lot of politics (and that is without the additional factor of being an out-of-province patient). The Transplant Team and TPN Team have been very clear that it is not safe to discharge James without a solid nutritional plan. This would need to include feedings (in some form) to supplement James' minimal intake. James' gastrointestinal difficulties are further complicated by the previous failure of a g-tube, and Cystic Fibrosis-related pancreatic insufficiency (leading to malabsorption and impaired motility). These are the realities of Cystic Fibrosis and end-stage lung disease. We are fortunate and grateful that James' lung status remain stable at 12%. 

In the time it has taken me to write these paragraphs, James has been able to fall asleep (despite the musical of bodily sounds from his roommates). I will allow him to rest without the pressure of medications and exercise. Updates to follow, but for now, love, love, and more love.


  1. If somebody believes in you, and you believe in your dreams, it can happen.Your dream is for James to get well and my prayers go out that this will happen very soon. try to rest the both of you. xoxoxox Donna