After the news we received late yesterday, we were relieved to get better news today from her cardiologist after her conversation with Alexandra’s surgeon. There was still some indecision about whether all the fluid they were seeing was in the pericardial sac around the heart or just more effusions around the left lung. We went through another series of chest x-rays to include one where they had her lay down completely on her left side.
Even after all of that, there was still some conflicting opinions; however, most thought that it was effusions around the lung and that if it was in the pericardial sac around the heart that she would not be breathing or walking around as well as she is. Therefore, we are staying the course for now with no other intervention at this point except an additional diuretic which makes three different ones she is taking now.
She walked quite a bit early today, and the physical therapist gave her a good workout making her walk to the playroom and around the hallway a couple of times. Later in the afternoon, we took her to the playroom where she made friends with a little girl not much older who is awaiting a heart transplant. We feel bad about being here for over two weeks, and they have been here for a couple of months already. Who knows when she will receive a heart and how long she will need to stay after a transplant would happen. It really puts things into perspective for us.
Unless you actually live through an experience like this, you can’t imagine how emotionally and physically exhausting it is. There is constant stress, and even if things are going pretty well for you, you constantly sense the stress that surrounds you both here at the hospital and around Ronald McDonald House. I know that things are going to turn the corner for Alexandra really soon, but my heart aches for those who I know will still be here long after we are gone!