still waiting

We are still waiting for a double lung transplant. We had a really good consult with Palliative Care a few days ago. We are truly impressed with the level of specialization and dedication. James' quality of life is a definite priority. We want James to be as comfortable and calm as possible with end stage lung disease. It is difficult to prevent breathlessness (and the anxiety that accompanies the sensation), and with that, it is more about symptom management. The team has a lot of empathy for James. We are striving for transplant, but it is also important to prepare for alternative outcomes.

James' gastrointestinal distress has resolved for now (with feeds returned to a trickle). There are few options for nutritional support, and each comes with a level of risk. Total Parenteral Nutrition could result in infection and sepsis (again). Nasal Gastrointestinal feeds come with nausea and vomiting, and could result in aspiration. James would not survive either outcome. We do not have a choice. We simply have to remain positive and hopeful.