Monday, April 22, 2013


We are becoming experts on handling crisis (after crisis). Everything can change in an instant. Everything does change in an instant.

Yesterday, James' tracheostomy site was changed as part of routine maintenance. James was given sedation for the procedure. I watched his oxygen saturation levels decline and his breathing slow down. It was very frightening to watch James stop breathing, and I became faint. He was placed back on a ventilator for a couple of hours to support his breathing. I was taken to a quiet room, and woke a few hours later as James was coming out of sedation. He was very scared to wake to the force of the ventilator breathing for him. I held his hand with that familiar feeling of helplessness. James was soon alert enough to breathe on his own and return to oxygen support on the tracheostomy mask. The team was exceptional. I am grateful for the level of expertise and incredible care.

Tonight, I held James' hand once again for reassurance and calm. (James also held my hand in return of that same reassurance and calm). The phone rang late in the evening, and I learned that James' ECMO circuit was in failure. The circuit would require replacement. The primary functions of James' ECMO circuit are to remove carbon dioxide from the blood and for oxygenation of the blood. The blood circulates through the circuit based on a prescribed rate of flow. There was no longer a functioning flow. James was in danger of life-threatening complications.

I was allowed to remain in James' room for the procedure. James would remain awake with minimal sedation. There were two attempts to replace the circuit. These attempts were unsuccessful. There was a fury of action in and around the room. It was possible that James would require a return to the OR. This was the definition of crisis. We both felt an intense fear with the presence of tension in the room. I was trembling by James' side. We were fighting against time.

At this point, I have been made to leave James' room. James has lost a lot of blood and will require blood transfusions. The entire cannulation will require replacement. James will be put to sleep, and back on a ventilator to support his breathing again. I now sit alone in the ICU waiting room and wait for the phone to ring again. I can feel my heart pounding in my chest. I don't imagine that sleep will come easily tonight.

The wait for transplant continues to be a painful process. We have both become vulnerable in many respects. We go through the motions of the day with hope and optimism for a different future, but it doesn't prevent the realities of our circumstance. James has end-stage lung disease. He will not survive without a transplant. We are very aware that his stability has become relative to the moment. We cannot take a single of those moments for granted.

Edit: My apologies for my lack of articulation tonight. The ECMO cannulation replacement was successful. James is very pale. He will require further transfusions. I am wide awake with these realities of waiting for transplant, but also grateful for exceptional care.

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