Monday, April 4, 2011

Monday Update For Ben

Ben was on the ventilator weaning test this morning when my friend Linda and I walked into his room. He breathed on his own for 4 hours before they put him back on the ventilator and he was totally wiped out when he was done. I sure hope he can tolerate it again tomorrow because the more he does, the sooner they can wean him. Lanny, Ben's brother was coming today because he and I had an appointment with the Kaiser Case Manager about Ben "possibly" going to an outside trach care unit. My social worker was there too. It worked out pretty good. The case manager told us that this was just to notify us that there is a "possibility" that he may have to go to this care unit. If the hospital can wean him off the ventilator, he will NOT have to go to the unit. THAT's what we are hoping for. They did say though that even if he stays at the hospital, he will have to go to a rehab center before he can come home. I had to sign a form saying that they can do CPR on him, etc. if need be IF he does go to the trach care unit. So everyone…PLEASE pray that the hospital will be able to wean him off the vent. Today the ICU doctor was Dr. Chang. He came in to talk with me. He said that Ben was doing better today. He said they did the ultrasound on Ben's belly and they discovered that he has gall stones and a fatty liver. They will deal with the gall stones later IF they become a problem. Doctor said that the fatty liver can reverse itself if been quits or cuts way back on his beer, he eats better and gets some exercise. Dr. Change said Ben's bloating should go away once he gets moving around more and works more with the physical therapist. Dr. Chang said so far everything looks promising. Ben was very responsive this morning before he fell asleep after they took him off the breathing trial. A physical therapist came in today. His name was Brent and Linda and I really liked him. He worked with Ben for about 20 minutes and Ben was very cooperative with him. Even did some of the movements on his own. I showed Lanny my letter from the Kaiser Grievance Department saying that the considered my grievance closed, so he called them. He could not make them understand that we want the grievance to stay open. Lanny is seriously considering having me file a malpractice lawsuit against Kaiser in the future. I feel really tired now that I am home because of all the stuff they told me during our meeting with the case manager. They were telling me all of these places I need to start contacting to check on possible long-term care if Ben ends up needing it and about getting long-term disability started for him. Even contacting Medical for financial aid because as long as Ben is on the trach, he is eligible for it. My head is just spinning around. I really hope I can get some sleep tonight. My social worker is going to help me fill out the forms for long-term disability probably on Wednesday in her office. There is just so much red-tape involved in all of this.


  1. Kay, my prayers are with you both. You sound so tired that my concerns are turning to you. One thing you might consider is to tape the conversations with the social workers so you can have instant recall if you need it. If they are doing their job, they should not mind. Same for Kaiser. Especially for Kaiser, is sounds like. Good luck with all the preparation ahead. I pray that Ben is on a turn for the good and does well with getting weaned. Do try to get some rest. There is nothing wrong with asking for help with all of this. You are stronger than I would ever be.

  2. Hi Kay, I'm proud of you for 'pushing' to get all of the help you need and deserve... Remember the saying: "The Squeaky Wheel gets the attention." Keep on demanding that they do what you want them to do....

    IF all of this started since or because he had a colonoscopy---well, then Kaiser is at fault. I would certainly consider some legal action --even if they would help with Ben's financial situation... (Just my opinion)

    I know you are tired ---but you (and the rest of the family) need to keep doing what is best for Ben... May God Bless ALL of you.. I know this has to be horrible. BUT--I am glad he had a better day today...



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