Monday, April 8, 2013

atrium adventure!

We are still here and still waiting for transplant.

I have come to hate Monday mornings (along with the rest of the world). Weekends are structured at our own pace. We have some degree of quiet and calm. We might even get thirty minutes without interruption. I complain about the slow process of constant waiting (and waiting), but I have come to enjoy the slow pace. It represents more time together. On Mondays, it starts all over again with the addition of a constant stream of people in and out of the room. It can become chaos. Everyone arrives at the same time demanding attention. There are groups of up to twenty people on rounds in discussion about James. I join the team in discussion, but often, with tears running down my face.

Mondays also represent another weekend without a transplant. I wake every morning with thoughts of the possibility of transplant for the day. I go to sleep every night with thought of the possibility of transplant for the night. It doesn't happen. It hasn't happened. It has been eight weeks of "soon" (while the days increase in length and hope starts to fade). As a friend said, "It will never be soon enough." Will we wait another week? It doesn't have to be a weekend. Weekends are just more probable. When? It is impossible to know.

In the afternoon, James did his treadmill routine followed by an excursion to the hospital atrium! This was a first for an MSICU patient on Extracorporeal Life Support (ECMO). It took several weeks of encouragement to build up to this adventure. There was a team of eight individuals to manage the equipment. James was finally able to leave his room. We bathed in the warmth of the sun for a good fifteen minutes. We feel very fortunate to be in the exceptional care of a team of dedicated professionals. James' spirits were lifted by the simple pleasure of sunshine and open space.


  1. My heart goes out to you and James.

  2. I'm so glad that James was able to go out to the atrium! You guys are working with a great team! Lots of hugs and positive thoughts being sent your way. I hope you get your transplant soon, James!
    - Denise C.

  3. Looks wonderful! Keep on kicking butt James! Lungs will come soon.

  4. There is a reason that he doesn't have them yet. Everything happens for a reason. They have to be the lungs with James name on them. we have to wait. They are coming and only God know when. Just enjoy each other and keep this courage you both have. Jo

  5. Girl, were you like standing on a chair for that photo? I know you aren't that tall. Amazing post, loved hearing about it today and nice to read and see the pictures. LOVE that this was the first ever ECMO EXCURSION. Careful, soon everyone will want to do this.... James is such a trendsetter. Love you both. mwah!

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