Wednesday, February 27, 2013

realities of ICU

It is hard to continue to update. I want to write, but I don't always have the words to articulate these experiences of incredible pain. We are both terrified. We know that each day in the ICU could be a step further from transplant. Every day increases the risk of complications and spread of infections. James is strong, with strength of all forms, but there are indications that his body has its own threshold of fight and exhaustion.

I could write about medical details, and day to day changes in health status, but the trend continues to be in the direction of a single conclusion: James is fighting for his life. He is on two different types of life support. He has serious infections in his lungs. The rest of his organ systems are trying to compensate for lack of oxygen and high levels of carbon dioxide. We are at a frightening point of survival. We are no longer maintaining that precarious balance. We are at the height of failure. James needs a transplant. He needs lungs as soon as possible.

James' care has been genuine and exceptional (with a few incidences of anger and frustrations aside). The level of expertise and specialization offers some degree of reassurance and comfort. The medical science keeping James alive is within the range of miraculous. We are so grateful for access to advanced medical care. The ICU and Transplants Team have a lot of hope for James. There is a strong belief that James will survive long enough for transplant. It is a faith to hold onto in those o so difficult moments of tears.

I am doing everything I can to take care of myself and cope within the best of my abilities. The exhaustion is wearing and cumulative. I have been at the hospital all day and every day since Christmas. I try to take steps back, and find time for myself, but in truth, I want all the time that I can have with James. I nap in fear and take coffee breaks with guilt. I leave at the end of the day with nausea in my gut.

My love for James is stronger than ever. I look at him with admiration for his incredible strength and determination. James has a lot of fight left in him. He has been going on the treadmill for three minutes each day. That's right. James is on two types of life support, and with the support and aid of a dedicated team, James is partaking in physiotherapy to build and maintain his endurance and strength. I beam with pride for him.


  1. Adena,I don"t know the words to try to say how you are a true inspiration to anyone going through a devistating situation.I pray for you both daily.I hope James gets his new lungs soon.
    Try to stay strong Love June

  2. Adena and James, I carry your story with me, each day. From when I wake to when I lay my head on my pillow, you are in my thoughts. James, I have a treadmill, too, and I take some steps for you, each day.
    STRENGTH AND LOVE, Catherine Voysey Fourdraine

  3. Adena, I admire your ability to find the joy there is in spending time with James at such a tremendously difficult time. I think of you both every day.

  4. James & Andera, you both are truley honest,loveing & inspering .My thoughts & pryers are with you Love & Best wishes from the east coast

  5. Loving you both, be there soon, I hope
    Susan & Carl

  6. Love you both and always wishing for lungs to come. They will.

  7. Don't give up hope! I know of a girl who was on the ecmo thing too and she got her lungs just in time. Now she's living life to the fullest and even doing different sports. #believe

  8. Sending you lots of healing thoughts.