Saturday, April 2, 2011

Saturday Update For Ben

I was expecting to walk into Ben's room this morning and see him the same way he was when I left him yesterday afternoon, but I was wrong. I was very upset and frustrated today. So much so that I vented on his nurse Jessica and the charge nurse Nerissa until they called a social worker to come in and see me. Ben was very out of it again. Jessica told me that the night nurse had given Ben some morphine this morning because when they asked if he was in pain, he nodded yes and also because his blood pressure and his heart rate were up quite a bit. They wanted him to calm down and sleep. I totally lost it telling Jessica that Ben is NOT ready to be moved from the hospital to a Trach Care Unit. His stomach is still very distended. They tell me that it is only air and NOT fluids. I told them that Kaiser does NOT care about the patients just how much money they can save by moving him to an outside care facility. I told her I wanted the doctor to come in so I could talk to her, but the doctor never showed up. The charge nurse called in a financial consultant to talk to me because I am worried that if they move Ben out of the hospital into the outside unit that if it takes more than 60 days for him to get well enough to come home, I cannot afford to pay for the facility. The financial consultant was a big waste of time. She told me that if it takes more than 60 days, I will just have to try to get help from the state like Medical or Medicare. I told her that we have a house and money in the bank and after hearing that, she said that we would probably not qualify for help from them unless we depleted our savings. I told her that was BS and I did not use the initials, I used the word and said it loud enough that everyone was looking into Ben's room at me. She mentioned possibly getting long term disability. I have no idea how to do any of this. The room nurse and the charge nurse kept telling me that the doctors will not let Ben leave the hospital until he is well enough to do so and when I asked "then why did a case manager call me to set up an appointment to start the paperwork to have him moved out" they said they still didn't think that would happen for at least a week or so. They will move him to DOU first. When the social worker came in, it was not the one I've been dealing with, but she told me that they all share their cases in the event that my regular one is not there. The social worker Jean sat with me for over an hour and just let me vent and cry my eyes out. She said she is going to get a hospital ombudsman to come see me because of my complaints and concerns. That will probably be on Monday. She also told me that I need to find someone to come and stay with me again because I am too distraught and depressed. Everyone keeps telling me that it's a good thing that Ben is "well enough" to possibly leave the hospital and go to a outside care unit in a week or so because that means he is doing much better and the doctors feel that this is the best next step for his recovery. That IS a good thing but then I start to worry again about the financial side of things. Around 11:00 AM, Ben's heart rate went way up. I ran and got his nurse and she checked his blood pressure and said that he was ok. She told me he HR does that every once in awhile. When I came back from a 20 minute lunch break, they positioned Ben's chair to where he was sitting up as if he was in a chair. I set up his little DVD player that I got for him to see if he would at least listen to an Andy Griffith DVD, but he was sound asleep. When he did wake up for a little while, he was really angry and was trying to "yell" at me and waving his hands all over the place. Then he went back to sleep again. He was still very out of it even when I left at 1:30 PM.


  1. Well the medicine (morphine) makes them much worse than they seem. And makes them act odd and out of it. Perhaps when that wears off he will see better. Maybe it will make him rest more for the time being. I am so sorry you are going through a hard time and I know it has to be confusing and scary to not know what to expect or know what is coming down the pike as far as care and expenses. I will keep praying for Ben and for you too.

  2. Oh, Kay...I wish I could give you a hug over the internet! I truly know the frustration and fear you feel, as I've been there. It's frightening to see the things you can't control seeming to run wild about you. Your advisers are probably correct when they say you would fare better with some (non annoying) friend or family around...the kind that know when to hush and just let you talk or you choose. Keep blogging...words and thoughts put to "paper" help us keep a clear head!

  3. Yes as Deb said keep blogging and getting it out of your system. I know we all wish we were closer and could be there for you but we can listen here. I've been there too only in a different way. My husband had a bad stroke when he was only 45 and I had to do everything so I'm listening.


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