Tuesday, February 19, 2013

ICU days

A few weeks ago I wrote a post about long days in the hospital describing our days together on the transplant floor. I wrote about the slowing of time, and that constant sense of always waiting, and waiting, and waiting. The days remain long and slow, but in a very different way. There waiting is critical. The waiting is urgent. We don't have that time to wait.

It is truly terrifying to be on hold for transplant. James needs the time to heal, but he also needs a transplant as soon as possible. We are at the critical point of that precarious balance that I am always attempting to describe. The passage of time marks movement towards our goal of transplant, but all of that is dependent on James' ability to fight this infection. We cannot predict the outcome. We are forced to wait in fear that the slowing of time will never end. It really does feel endless at times.

I allow my body to wake at its own pace. I move around the apartment with a morning restlessness. My level of anxiety rises with the time it takes to gather myself and prepare for the day ahead. I run to the hospital in the morning in complete panic for no reason other than an incredible need to see my husband. I often arrive during shift change. The tears start to flow. The seconds are too long. When I am finally able to see him, I feel a wave of relief (and more tears beyond my control). I laugh at my emotions, and I squeeze his hands. We look at each other in stopped time. We are together again. There is joy in nearness.

I pull a chair beside his bed, put down the side rail, and snuggle as close as possible. We share morning affections and details of the night. I talk, and James writes. James wakes slowly, and is often confused in his wakings. He does not always remember the night, or even the previous days. He has vivid dreams that blur the boundaries of realities. He does his best to stay grounded in the moment. I help brush his teeth, wash his face, and partake in a morning routine of cleanliness. We engage every opportunity for shared intimacy, because of the need for closeness.
Waiting starts the day, and waiting defines the day. We wait to been seen by the Transplant Team. We wait to be seen by the ICU Team. We wait for Physical Therapy. We wait for Respiratory Therapy. We often speak with the Palliative Care Team, Social Worker, and Spiritual Care Worker. A psychiatrist will also make an appearance. We may even meet with our Transplant Coordinator. The excitement continues with scheduled tests, blood draws, pokes and prods, and an incessant beeping of machines. It is remarkable that time can be so seemingly slow with constant stimulation in all directions.

At some point in the morning, James will be moved to a chair. This minimal level of activity is essential for his muscles and strength. This exercise allows for chest expansion, and forces his lungs to continue to breathe (with the support of the ventilator, of course). We hope to be able to advance to walking a few steps, but it may take a while for James to get there. There are many challenges and barriers, including breathlessness, muscle weakness, and fatigue.
We both feel the weight of our eyelids by the afternoon. James falls into a deep sleep, and I escape to the waiting room to eat, and often, to fall asleep. My family and friends come with food. They come to sit. They come to support. I move through the day and I go through the motions (and emotions). I feel a range of intensities between each change in James' state. He is not stable enough to ever completely allow for rest. I am hesitant to leave his room and close my eyes. There is pain in the separation, because of the level of uncertainties. It is difficult to describe.


  1. James is looking alittle tired but he is looking really good at the same time. Adena your writing is beautiful.I hope you are keeping a journel.My thoughts and prayers going out to you xoxoxDonna

  2. Cyber hugs carrying tons of energy, happiness and strength to James and a lovely scalp massage for peaceful sleep tonight for you.

  3. How wonderful to see James smile ! That of itself is so encouraging. Even though he is on "hold" it doesn't sound as if it will be for long.
    Love to you both,
    Susan and Carl.

  4. Adena,your story of James is the most moving story I have ever read!I cry each and every time I look at your blog.I pray for you and James and I know that he will try with all his strength and you will be beside him all the way.Your love is pure and everlasting!You are in my thoughts daily and I wish you the best Love June