Today has been a long day. First thing this morning Rafi had a CT scan to see how her lungs are progressing. Then we learned that Rafi has an issue in her esophagus but because they only did a modified barium swallow test, we would need to get a full one to accurately diagnose the issue. So this afternoon, Rafi traveled back down to the pediatric imaging department to have more x-rays done as she drinks some white chalky liquid flavored to taste something like apple. Without fear and without complaint Rafi sat still for the CT scan and she drank the pepto like substance in different positions as they blasted her with x-rays.

The results of all these tests seem to indicate that the pneumonia was caused by her aspirating something. Being that we weren’t feeding her anything, it had to be her saliva and mucus. So now, our doctors are in conversation with the GI doctors about the risks of undergoing an esophageal dilatation at her early stage of recovery from transplantation. I see it a bit differently right now. If we agree that it was likely an aspiration that sent her to the ICU, then we are still at risk of her aspirating again. That is the known. The rest is unknown. The decision should have been made already to move ahead. Every hour the doctors discuss strategies or risk versus reward contingencies, Rafi is at risk of aspiration and potentially being intubated again. In fact, our fellow postulates that Rafi is actually mildly, yet consistently, aspirating. I will not wait around another half a day as doctors debate about hypotheticals. In the words of a Ghostbuster, “let’s show this bitch how we do things downtown.” I am a New Yorker, which means I believe that time is of the essence, and this needs to be done sooner than later. They will have to see things my way, because I know they are not going to like me mad.

I would write more but I am just exhausted. Until tomorrow……..