Dick was discharged from the hospital Tuesday, with the repeated advice from his nurse of the day and the discharge resident of hospice. We got the message that they did not want to treat him and that in their opinion he should go home and die.
I spent most of the day getting the lift for the wheel chair installed in the van and pulling together all the paperwork for the ramp. I got to the hospital about 4 p.m. and got told I should have been there earlier because the Nurse Case Manager left at 4. I was also told that the Nurse Case Manager had phoned me twice. I have no record of any phone call from her on my home phone or cell phone. I had asked for the hospital to refer Dick to home health. The Nurse Case Manager said she did not see the need (subtext he needs hospice). I had no chance to explain that we had not refused hospice that in our mind we deferred it. The hospice we interviewed had told us they could not do port draws. Dick still wants to have his Procrit shots weekly and the time will come when he will not be able to get out of the house so I wanted a service that could do the port draws, get the lab work done, and give the Procrit shot. It made sense to me that Home Health could do that function and provide other support in the home. I explained this to the resident and he said there were other hospices and I should try them. That if I had been there the Nurse Case Manager would have made arrangements for me to meet with several hospices at the hospital.
Since they were discharging him before he felt ready and given that he had several acute asthma attacks while he was there I told them I could not transport him and he needed medical transport. I had concerns about his ability to step up into our minivan and climb the 4 steps into the house. They made arrangements for medical transport, I think somewhat reluctantly.
As I was leaving Dick pulmonologist caught up with me in the lobby as she had spotted me. We sat and talked for a few minutes. I know that she had spent about an hour the night before talking to Dick in his room. The question is whether to take some action about the fluid on the lungs and around the heart. This would involve putting needles in and draining the fluid by interventional radiology. This is an invasive procedure. Dick's luck with services by interventional radiology has been erratic. As we understand it the benefit doesn't last and would have to be repeated. This might give him some more days or weeks or it might not. We are still thinking about it. I don't think she was recommending it but just informing us.
Wednesday I spent the morning on the phone talking to a different Hospice facility. The answer came back that Medicare would not approve what we wanted as they would see it as active treatment. We have a difference of opinion as we think of getting a Procrit shot as a quality of life issue. In essence we are saying that we cannot do anything about the bladder cancer and he doesn't want to die by losing his red blood cells. Perhaps it doesn't make sense but it doesn't have to. It is about the only choice left.
I phoned and left a message with the Nurse Case Manager letting her know that I had contacted a Hospice agency and they also would not provide the service we wanted. Then I thought I have the phone number of the Home Health Agency that followed Dick after the MRSA and BCG infection in his abscess. I phoned them directly and discussed what we wanted and they didn't say no but would check on the possibility and contact the oncologists as they would need a Doctor to order the service.
Later I received a call from the hospital that the Nurse Case Manager was ill and could not return my call. i explained to the person covering what we wanted and she said our request did make sense to her and with my permission could she phone the Home Health Agency. I said go ahead. In about an hour she phoned back to say that she had phoned them and had been authorized to tell me that we would be getting Home Health Services. Yeah for me! If you want something done sometimes you have to ask directly instead of following medical protocol.
Also Dick has not had any acute asthma attacks since he came home. He even managed to walk down the hall to the bathroom today and did not start wheezing. He is on a higher level of oxygen and he takes it slow but he is getting steadier on his feet also. He has to keep his appointment at the Cancer Center Tuesday and discuss this with the Nurse Practitioner as they will be ordering the Home Health Service. Thursday he has the nerve block for his rib pain and sees his primary care physician. After that I expect that he will be home bound unless the wheelchair and the ramp and the lift really do provide the means for him to get out of the house with minimum exertion.
Exhaustingly yours, Julie
