My mum has been in ICU for 7 weeks. Two weeks induced coman, 5 weeks ventilated with tracheostomy. She initially was been weaned off ventilation and managed up to 6-8 hours breating on her own for a couple of days, but has declined over the last three weeks. She also managed to sit in a chair for about 5 hours on one day and was trying to communicated and clearly had all her chairs at home. She even managed to let me know what her PIN number is for her pension! It was the day after that she began to deteriorate. She is now only doing 2 hours at a time. She has ARDS and cricial illness myopathy. She has no movement at all anywhere appart from her shoulders, upper arms and head. She has started to become distant when we go and visit and isn't really responding to conversation. I've been worried sick about her apparent deterioration and asked to see her consultant this weekend. He was on holiday so I spoke to the consultant available. She said that from her notes, she didn't think there was a particular cause for concern, that she wasn't deteriorating, but had stayed the same. Her infection markers are still down, she is no longer on as much sedation and she was just comming to the end of a strong course of steriods. When I visited on Monday she was lifting her head completely off her pillow which I had not seen her do before. However yesterday the consultant who is assigned to my mum told me that she is not recovering, and that staying static is actually a bad thing. He said that she is not able to sustain breathing for any longer than 2 hours because the nerves and muscles which should work her lungs are damaged. He has suggested the kindest thing would be to withdraw treatment. Does anyone have experience of this? Thanks, Karen x
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