I am looking for the light, and I am lost in a muddle of overwhelming emotions and dissociative thoughts.
There have been no improvements.
James' respiratory status is deteriorating without explanation or known cause. James is on the highest possible ventilation settings. His carbon dioxide levels continue to rise to dangerous levels. He is back on heavy sedation in attempt to improve the consistency of his breathing with the ventilation settings. He continues to have signs and symptoms that indicate potential liver and kidney failure. Edema remains a significant concern despite efforts at diuresis.
The team has made several adjustments and changes to his medications in efforts to resolve these issues. He has also started treatment for potential rejection. It is possible that there are a number of factors contributing to his decline, but without clear indication of infection or improvements with diuresis, it is reasonable to consider rejection as a cause.
We are receiving love and support from all different directions. We feel very embraced by the ICU and Transplant Teams at Toronto General. We are both getting the best possible care.
James also has all the strength in the world. He will recover. It will simply take time.
Adena, I have been following your story for many months. I am in awe of the love you and James share. Please know that prayers are being sent your way from Nova Scotia....Darlene
ReplyDeleteThank you. We really appreciate your support. xo.
DeleteAdena, I have been following your blog for the past six months and wait breathlessly every day for your updates. I am one of many who are pulling for James, and for you. Your writings reveal the highs and lows of transplants and your journey. They have brought us inside your life and make us aware of the tremendous fight James has been giving for all this time. Pulling for you & James..........................
ReplyDeleteWe are definitely in the middle of a tremendous fight. I know James will continue to fight. Thank you for pulling for us. I will continue to write, during the downs, and during the ups. xo.
DeleteYou must stay strong.This ,I am sure is very hard to do ,but James is such a fighter. My thoughts and prayers for you both xoxoxoDonna
ReplyDeleteI'm searching for that strength. It helps to have so much love and support Thank you, Donna. xoxo.
DeleteHolding you both in our hearts on the west coast, Adena. I think of you and James first thing every morning. May tomorrow bring better news -- may you both be well, and free from suffering, and safe, and happy.
ReplyDeleteThank you for keeping us close to your heart and thinking of us. We hope to be back on the West Coast soon sharing our love with everyone. xo.
DeleteDear Adena, I am deeply sorry for you and James. I don't know you, but through your amazing writing I must say I love you and James. I am praying for you both, I am wishing all the pain begins to receede from your lives and that you two can once again hold hands in the sunshine. You are a beautiful person.James is incredible,too.
ReplyDeleteThank you. I feel the love. We both feel very loved. I too wish to hold hands in the sunshine. It is a lovely image. Thank you for the smile. xo.
DeleteTo both of you,
ReplyDeleteI have been following your story as I had two friends with CF that didn't make it. Your story is an incredible one. I hope James soon turns a corner, he is incredibly strong to have made it this far and as tentative as hope might be right now, its still there and still exists...