With greater and greater need for pain control, Rory's HBS doctor increased his fentanyl patch from 50mcg to 75mcg to 100mcg over the past week. Unfortunately, it also caused nausea and vomiting that was unrelenting, and that even high power anti-nausea medications would not help. Thankfully, she backed down the dosage to 50mcg, which stopped the constant vomiting. The down side: Rory is hurting more, and needing more morphine to control pain. He is trying to not use it, but it reaches a point that he can't control it himself and has to use the pain medication (Remember, he did not require narcotics at all while he was getting the sodium thiosulfate).

We really do not understand why his doctors that made this "decision" are not thinking compassionately, why they insist on refusing to give him the one medication that made the biggest difference in helping him to keep a decent level of quality of life. It certainly isn't over the cost, or the side effects (there are none in Rory). They refuse to contact the physicians who are using sodium thiosulfate to treat calciphylaxis. And his nephrologist (who he fired but is stuck with while she is the "on call" nephrologist this week) isn't willing to even learn about this medication to help him.

We did attract attention finally from administration. Dr. Sheffield, the assistant physician-in-chief came to see us yesterday afternoon. He basically told us that the administrative physicians (i.e. him and his boss, Dr. Craig Green), do not make clinical decisions. This "committee" that was formed and met last week included people who, according to Dr. Sheffield, the assistant physician-in-chief at the hospital Rory is at, who were not supposed to make a medical decision (such as the physician-in-chief, who is supposedly only working in an administrative capacity, not involved in clinical decisions, according to Dr. Sheffield). We feel strongly that this meeting that was held last week was not to discuss what is best for Rory, but how they could refuse to give the medication.