Today was disappointing. We had our family conference at 11:00. Their idea of the conference is to report to me the skills Doug currently has. The reason I called the conference was to ask each of the therapists if they believe that Doug will continue to make the progress he has been making with the 15 to 20 hours of week of therapy with only 4-6 hours of home therapy and no equipment. As you can imagine that question never really got answered. The answer was that everyone has to leave. Doug has stayed longer than most. He will progress, but it will take a long time. The expectation is for me to provide total care and continue the therapies with Doug as well as take care of everything at home and work. In the patient handbook it says that the patient will be discharged once the patient is no longer progressing. The transition coordinator and the therapists did not seem to know this was in the patient handbook.
Tomorrow the team is having a meeting and will make the final decision on the discharge date. I called and talked to one of the doctors today about my concerns since none of them could be at the family meeting. Doug was suppose to start a bowel program the last time we met. That has never been implemented. The doctor checked on it for me and said that an order had been written for March 9. The nurses did not seem to know it was there because they kept telling me there was no order. They started the program today after the meeting. I think it is too late to make a difference by Friday. We will see. I also told the doctor I was still concerned that Doug cannot stand and pivot. He needs the Hoyer. And he cannot ride in the car because I can't get him in and out of the car. He understoood my concern, but I don't know how this will translate at their staff meeting tomorrow.
Tonight I need to decide if I want to file an appeal process for his discharge. I don't think it is right to discharge him with the progress he is making to a lower level of support and with the expectation that I will care for him or provide private care. What has our health care system come to? Why do I constantly have to advocate for his needs? Shouldn't the health care worker be the one to lead the charge? I am very disturbed by what we have experienced. Sadly, Doug is tired and wants to come home. I don't blame him. But I really don't think it will be in his best interst or mine right now. That being said we will see what tomorrow brings.
God of Light, driving home tonight in the darkness and rain, it reminded me of the dark snowy winter nights that have been a part of our journey since December. We have been blessed by a few who have journey with us in the health care system who had a strong vision of Doug's continued progress and his restoration to health. My prayer tonight is to find therapist that will champion Doug to wellness. Therapists who will cheer us both on. Therapists who are in for the long game and not the short sprint. God of Light, shine on our path, so that we may make clear decisions that will expedite Doug's recovery. In your name we ask it. Amen
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