I have been in the hospital with my 14 year old fo...

I have been in the hospital with my 14 year old for four days, she has a very rare and serious disease. From the moment we were admitted via flight for life, I made it very clear to every person that walked through her door that I needed two things. 1. A doctor who had knowledge of said disease to discuss my child's condition and explain things to me 2. A plan for pain. As her disease does not allow her to take many of the drugs, and since her level of pain during an attack is comparable with childbirth, i asked to utilize this hospitalization to explore some pain options as the only pain option we have currently is a very hardcore narcotic. I have been asking for both things for four days, and I was told I would see both of these come to fruition day 2. Here we are day 4, such a long stay because the doctors twice gave her a substance that caused a re-attack, and not one of my goals has been realized.

They are sending me home in the exact same position I came in. Not once have I had access to a knowledgeable doctor, my own can't hide his ignorance of the disease. Nor have they attempted to remedy my medicinal issue. I just called my specialist to ask her to rally with me, to help them understand the situation and she said that she has been trying to get a hold of my Dr. all weekend, and he has never called her back. Actions speak much louder than words. Compassionate care? I think not.