Friday, May 31, 2013

moving forward and backward

There is an intensity to this level of exhaustion. I am vulnerable to my own emotions. I am waiting for that sense of relief, but I still feel the weight of uncertainties. I need to find a place of peace and calm. I want to be able to rest with the knowledge that James is moving forward, but I continue to feel the weight of the unknown. I watch my love in incredible amount of pain, and I feel that familiar helplessness.

I have to reconcile the intellectual with the emotional. I know that James' recovery will be completely different that his first transplant. I recognize that it is a long and slow process. I am aware of all the various factors that could influence his short-term and long-term recovery process. I know that there will be complications, and I can prepare myself for the inevitable.

My emotions are beyond my control. Yet, I am not flooded with fears and anxieties, but rather, I am hesitant. I am afraid to let go of control. (Of course, I have no control). I suppose I need to know that James is still present. It is a strange feeling of almost desperation. He has rarely been awake enough to communicate. I long to see those blue eyes and sweet smile. It comes with a wave of overwhelming emotion, and I find myself in joyful tears. It is James. James is all I need. 

We continue to have difficulties with pain management, and the subsequent impact on James' need for sedation, and on the function of his respiratory system. There have been some improvements to his blood gases, but I know that variability is within the realm of expectations for this stage. 

James will slowly be weaned from the ventilator in balance with these changes. It is very positive that James has been able to tolerate pressure support settings on the ventilator for short periods of time (rather than a more invasive pressure control). That being said, James may require pressure control with increases to his carbon dioxide levels or other negative changes to his blood gases. This could be a response to high levels of sedation and analgesia, or James' own anxieties in relation to pain and movement. It is all part of the process.

Physiotherapy worked with James in his bed on range of motion exercises. He was limited due to intense pain, and the movement of sputum and mucus in his lungs. The secretions have been very thick, and James does not have the strength to cough (to support proper suctioning and clearance). A decision was made that James would have a bronchoscopy to clear secretions from his lungs, and to get a sputum sample. We have been informed that James' donor lungs have returned a positive sample for a Staph bacteria. Another antibiotic will be added to his regime to fight the infection.

We will continue to move forward. We will continue to move backward. This is all part of the process. We can expect challenges ahead. We can also expect celebrations. I have complete faith and trust in James' medical team. We feel the love of the entire ICU. Everyone is invested in helping James through the best recovery that is possible at this stage.

I find some reassurance in James' smile. I can hold his hands for hours waiting for him to open those eyes. I am then able to close my own eyes in hope of some form of rest.
Fancy Shmancy Stockings and Chest Tube Drainage


  1. fancy red bed sheets! never seen those before! sending you healing thoughts!

    1. alas...just the vinyl mattress cover - but I love your thought!

  2. In my thoughts, sending him strength and to you as well!

  3. James is in all of our thoughts. I remember waking up after major surgery without any pain management, and that was such agony... I cannot imagine the levels he must be experiencing now. :( My heart hurts for both of you, and I hope that it is under control soon.

  4. Standing by with open arms, to lift you up and squeeze you tight, to offer comfort, encouragement and a little bit of kick ass - Go, James, Go!
    Peaks & valleys, hiccups, bumps, back tracking and leaping forward -'ve been there done that before and will conquer anything that gets in your way!
    Love, love, love