pain

Tuesday and Wednesdays were hard days for James (and subsequently, for myself). He was in an excruciating amount of pain. His shoulder was very bruised and swollen from the ECMO replacement. Pain management became a serious issue. We were both advocating to the best of our abilities, but there were difficulties in finding the right balance. Pain medication can decrease respiratory rate, and James' respiratory rate was already low as a result of the sedation from Sunday and Monday. There was concern that the medication would cause James to stop breathing on his own, and James would require ventilation again. That being said, James and I both felt as though pain management should take precedence as a quality of life issue. It was a tough few days (to say the least). It took a while to feel heard, but with the help of Palliative Care, James' pain is finally under control.

James' pain has also vastly improved with a reduction in swelling and bruising. He is able to participate in physiotherapy again, and is largely back to his regular routine. There is no sense of normalcy in the ICU, but James and I have managed to structure our days in a way that allows the time to pass at a reasonable pace.

The wait remains exceptionally difficult. James and I continue to struggle with heavy emotions. That is a different type of pain all together. There is no solution in pill form. I no longer feel a complete urgency for transplant, because of the magnitude of fear for post-transplant complications. James is stable and functioning with some level of independence on a day to day basis. This will all change with surgery. We are coping with the unknown. We have to remain in present time. It is all to overwhelming and intense. It is all too painful.