Please help Charlie. He has RYR1 related congenital myopathy (Myotubular Myopathy) which affects the skeletal muscles especially the breathing muscles so just taking a breath is hard work for him and thats why hes on a ventilator, it pushes air into his lungs so he doesnt have to work so hard. He cant manage the saliva in his body (secretions) so we have to use a suction machine to clear his airways, tracheostomy, nose and mouth and thats the main reason he had a trache put in because he gets plugs that are hard to remove. He arrested a few times and we nearly lost him. Hes prone to infection, especially chest infections and a simple cold could kill him. Hes fed through a PEG in his stomach because he has Bulbar Dysfunction which means he doesnt know how to swallow and he breathes it in instead and ends up drowning in fluid. He cant hold his head up (although he tries) cant sit up and wont ever be able to walk. He spent almost 9 months in hospital from when he was 5 months.
Posted on: Sun, 24 Aug 2014 09:29:13 +0000
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