another day in the ICU

We are sick and tired of being sick and tired. We talk a lot about quality of life in the ICU. That is, a lack of quality of life. We are as positive as possible. We make the most out of our situation, but it doesn't seem to be enough to really lift our spirits. We still laugh every day, and I have managed to sneak into his bed for a cuddle here and there, but at the end of the day, I still have to go home, and James and I are left alone with our fears. It never gets easier to leave him. We are afraid to never see each other again, and it is not an unfounded fear. Guilt doesn't change the circumstance, and I need to be able to sleep at home, but I still feel nauseous each night. We really ache for each other in the dark of the night. It is harder to reassure ourselves without another calming voice or a hand to hold. The night seems to take advantage of our vulnerabilities.

In the evenings, James and I play games on the iPad. We watch shows on the computer. We avoid sleep and ignore the heaviness in our eyes. We stretch our time together as long as possible. At shift change, James and I can barely stay awake, and it is time to wish each other the sweetest of sweet dreams. We hesitate to steal a few more moments together. It would make leaving impossible. I am grateful for friends and family members to meet me outside this sterile environment, and get me through the final hours of the day. I crawl into bed looking forward to sleep, but my thoughts are always on James, alone in the hospital, with a long night ahead.

In terms of health, James is stable on life support awaiting transplant. We recognize that being "stable" in the ICU on ECMO holds a different meaning, but I think it is important to acknowledge. There is some level of comfort in the knowledge that James is doing as well as possible given the circumstances. Small achievements and improvements are grandiose on this scale. James no longer relies on the ventilator to breathe for him, and with that, James is given a a few hours each day to be able to speak. It is wonderful to hear his voice after a long month in the ICU. He also continues to make progress in physiotherapy on the treadmill, and with his weight exercises. This will help optimize his health for transplant, and contribute to the best possible outcome for post-transplant recovery.