debdanielson

Thank you so much for answering. I just called the hospital and my dad’s temperature is down to 99, thank God. In regards to a blood infection, they have tested his urine and his blood and came back with nothing showing up. The past two visits he had e coli in both his blood and his urine and they treated him for that. Then this visit he had c diff and they treated him for that. In all the stuff they took today they couldn’t find anything. They also checked to see if maybe his port is infected but as far as they have told us they have nothing yet. I do not think that anyone at this hospital is familiar with his disease, especially not on the infectious disease floor where he is. Tomorrow morning I am going to try to start the process of getting him transferred to another hospital, providing his oncologist will be a part of the treatment program. I am not thrilled with the care he is receiving at this point anyway- tonight my mom and I waited about two hours for a nurse to come and take his temperature after we had asked them numerous times. The nurse assigned to him actually turned away from my mom and went into an equipment room and shut the door in my mom’s face as she was asking her for the very first time if someone could take my dad’s temp. I had to go to the charge nurse and ask for the patient advocate’s number before anyone would pay some attention to my dad. By then he was almost 103 and had been huddled shaking under the blankets for a few hours while we waited with him for the shift change to be over. So I would like to get him out of that place or at least onto the oncology ward. I hate complaining and for the most part the nurses we have dealt with are pretty nice, but I hate feeling helpless and knowing there is nothing to do to help my dad as he is laying there with shivers wracking his body. My dad is 6’3” and has been strong and healthy his entire life until late last year when he started having stomach troubles. He had frequent diarrhea and vague abdominal discomfort that lasted for a few months before his primary physician sent him to a gastroeneterologist. That doctor just thought my dad was depressed for some reason and stuck him on Lexapro. My mom called the doctor later and told him she would like my dad to have a ct scan and the doctor said ok to humor her… and here we are. Ct showed mass in the liver, liver was biopsied, biopsy malignant. At first they said it was pancreatic cancer but then after another special kind of ct they said it was cholangiocarcinoma. And my life and my mom’s life and certainly my dad’s life will never be the same. I am sorry if I sound whiny or melodramatic… it is 3am and I haven’t been sleeping well lately and right now all I can think about is that my dad is dying. How do I make it easier on him? How do I make him stay with us as long as possible? How do I make him better? I see all these treatments that are available in other countries and seem standard- like photodynamic therapy, this sir spheres, some others. I do research all the time to see where in the US he could get that kind of treatment and I am having the hardest time finding the information. A place in LA does photodynamic therapy. How do I contact them? How do we get involved? Will he ever even be well enough to travel again? I think for tonight I should stop this because I am full of despair. I just don’t know where to go. At least I can read other posts here and see that this is a crowded boat and I am nowhere near alone.