Jamie murray appeal nursing care

We are at breaking point in July last year we had a team meeting in the hospital when Jamies condition deteriorated. doctors palative care team public health nurce social workers ot and physio all agreed we needed more help as jamies care is 24 7. It was agreed and the phn said she would put in a business plan for 7 nights so that we had the       strenght to mind him during the day that was 7 months ago and we only have 2 nights. Jamie is getting weaker         every day and is continuing to do so. Jamies bedroom is a hospital room at home his recent visit to hospital 3 weeks ago hes lungs were full of fluid and infection hes scoliosis is 60 degrees he has being on oxygen since then. His platelets are low they cant get iv access any more and were not resusiating him if and when he goes into faliure .With the last 3 weeks every time we try and wean him off oxygen he struggles to breath  his face is getting sore . He cant get much fed into him he is house bound. Jamie deserves more care he has defied the odds with the last 8 years the hse have always failed him and we should not have to fight to get help. He is a strong and determined and by no means going any were. We want to be hes parents not hes nurce and doctors and spend time with him as a family. We are exhausted the nearest restbite is dublin were at breaking point we want to keep him at home we can not afford to pay for nurces to give us the support jamie needs. We need your help and if you can financial help us please do every bit will help pay for nurces for Jamie please help him.