Monday, June 17, 2013


Heroics. That is the word for all this. James is a hero. He is making enormous strides. He keeps pushing forward. His courage is unbelievable. I tried to express my deep admiration, and I found myself in tears. Words are completely inadequate here. I am so proud to be his wife.

James has been walking the entire unit in the mornings, followed by independent arm weights, leg weights, and standing stretches in the afternoon. He has a very strong sense of motivation, along with a very real determination and drive that makes an incredible difference. (We all already know this about James. His pre-transplant days were a testament to it).

James' improvements are evident on all levels with a promise of future health and benefit. The most essential (and remarkable) change has been in James' respiratory system. His hard work has made for steady weaning from the ventilator. This can often be a very long process with a lot of back and forth movement between the various stages. James has been on minimal support for the last twenty four hours (and for twelve hours on previous days). This afternoon, James will make an attempt at a spontaneous breathing trial. That is, James will breath completely independent on the machine (with oxygen support). It will be a short trial of a couple of minutes followed by longer trials in the coming days. It is all part of the process.

Another major area of change has been with James' gastrointestinal system. James has a long-standing history of nausea and vomiting episodes as a result of severe dysmotility, delayed gastric emptying, and pseudo-blockages. He has not been able to tolerate entereal feeds (or anything by mouth) for the last six months. He has received his nutrition directly into his veins through Total Parenteral Nutrition (TPN), in addition to trickle feeds to preserve the function of his digestive system. Unfortunately, TPN has been known to cause infections and sepsis over the long-term. A major hurdle for James will be developing a tolerance for feeds. James will not be able to eat or drink with his tracheostomy, but at some point, James will need to slowly re-introduce liquids and solids. He will also need to regain strength in his swallowing muscles. This will be a major goal for eventual discharge from the hospital.

We can expect a difficult and slow process, but James is braving the very early steps of weaning from the TPN, and increasing his nasogastric feeds. He follows a strict bowel routine to encourage digestive motility and prevent bowel blockages. Nevertheless, James continues to face daily nausea and vomiting episodes. He is pushing through the discomfort with incremental changes to his digestive routine. This is a remarkable feat.

I wish I could convey the magnitude of these steps forward. We are right on track with forward motion (right out of the ICU). We move with cautious optimism and a weary knowledge of potential challenges. James can also be hesitant at the speed of this pace, but I sense confidence and readiness in his movement. Everything feels possible all over again.


  1. I only 'know' you and James from the internet. I was originally pulled in by the sweetness I perceived in the James' photos. But I may have been mistaken. I thought you had an all-about-loving kitten as a husband, Adena, but I think what you really have is a TIGER! All good thoughts from me to you and James each and every day.

  2. I am in awe of the strength BOTH of you have going through these extreme challenges together. If you did not give each other the reason for continuing on, for pushing through, for fighting so hard...well, let's just say love moves mountains, and you are proving it again. I am a CF cyster in Toronto, following your blog, and you both give my husband and myself such confidence and courage to face what is ahead for us on this transplant journey. God bless you both. We continue to pray for James' full recovery.

    P.S. We knew a David Reimer in Toronto, originally from Kapuskasing. Any relation?

  3. All of us at Salt Spring Island Legion are pulling for you James. Love from us all.

  4. Hang in there, I too am a CFer having received a double lung transplant April 2012, fortunately no complications. I hope you will experience what I have, it's amazing, now I only cough in my dreams

  5. Good news to hear! Keep it up :)