She is 7 years old and has Rett Syndrome. (Plus a lot more underlining issues) She has been in Hospital since 26th October 2013 (10 months now.) Melody originally went into Great Ormond Street Children's Hospital for a 5 day admission for an Operation, but this uncovered more problems than anticipated and now Melody requires a continuous Morphine and Ketamine pump attached to her 24 hours a day (due to bursts of Chronic pain) running alongside her TPN (Total Parenteral Nutrition, which supplies nutrients to her body intravenously).
She also suffers from Intestinal Failure, internal bleeding, Enteric Neuropathy, Autonomic Dysfunction, and an inflammatory process which have also contributed to Melody being in Hospital.
Due to Melody being connected to Morphine and Ketamine, we are being told that Melody cannot come home (due to licensing and care support) by the Croydon Commissioners committee.
Melody has been ready for discharge since February but due to the Croydon Commissioners Committee they are keeping Melody in hospital against her Human Rights.
All we want to do is bring Melody home, she is classed as Life limited and no one can say how much time she has left. It is imperative that Melody gets home as soon as possible to be with her family and get the quality of life and normality that she deserves. Both her Parents are fully trained in TPN, IVs, Oxygen, Resus and currently awaiting their NCA training. 13 different home nurse support packages have also fallen through and there is no other option.
There are multiple mistakes being made on a daily basis in her care which put Melody at risk (and could potentially be life threatening) at hospital by nurses. mistakes which would not happen when her parents are providing the support at home as she will be getting 1:1 care from both parents as they both know her care plan, needs and medical support off by heart.
It is time to let Melody home with her family providing her care, where she will be happy, safe and be able to live the life that every little girl deserves.
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