Critical illness myopathy

Hi. I'm a mum of a 16 yr old who suffered post surgery complications after a spinal fusion. She ended up with an emergency tracheotomy and then the following week had some event. She has just been comfirmed by a muscle biopsy with critical illness myophady. aprohy of the fast twitch fibres.) They are still trying to rule out spinal damage its six weeks here today and I'm so scared for her. She is awake and can't speak as she's still on a ventilator so I'm so heartbroken. If there is any words of encouragement I would be most grateful.

Thanks

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  • Thank you for sharing your daughter's situation. I know how scary this must be watching your daughter suffer in this situation.

    Especially if your daughter is being awake, on a ventilator and tracheostomy it's one of the scariest things for Patients and their families.

    But know there is hope, most Patients leave Intensive Care alive, in fact 90-94% of all ICU Patients leave Intensive Care alive.

    Having a tracheostomy doesn't mean that ventilation and trachea can't be weaned.

    To begin with, take a look at those articles and videos here

    WHAT HAPPENS IF MY CRITICALLY ILL LOVED ONE CAN’T BE WEANED OFF THE VENTILATOR? intensivecarehotline.com/qu...

    WHAT ARE THE RISKS AND BENEFITS OF A TRACHEOSTOMY? intensivecarehotline.com/qu...

    TRACHEOSTOMY AND WEANING OFF THE VENTILATOR IN INTENSIVE CARE, HOW LONG CAN IT TAKE?

    intensivecarehotline.com/qu...

  • Thanks Fitz. As she has only a tiny bit of movement from the neck down with the critical illness myopathy it's really terrifying for her and me. To tell you the truth she's much better at coping than me As I said please god in a couple of months she will regain some muscle strength and the muscles that have Died the other type slow twitch will take over the role. The weaning seems to be related to the myophady. If she can either talk or text me to let me know how's she feeling It's such a long road before we know what quality of life she will have.

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