My daughter who is 13years old and profoundly disabled from an undiagnosed neurological condition.
She got a Tracheotomy when she was 7yearsold due to the shape of her jaw and struggled to breathe. The trachi really improved her breathing but after several chest infections at 8yrs old drs said she was in respiratory failure.
She also can’t move at all, has sever curvature of the spine, is tube fed and since March has been sleeping more and more. Since September her oxygen requirements have gone up and up. But no infections. Needing 1-3 litres most of the time and 7-15litres at other times for the past 4 weeks
Last week she was need 10litres to keep oxygen levels at 89% but I’ve discovered this week it doesn’t really matter how much oxygen above 3litres I give her It doesn’t change her oxygen saturation’s.
3 weeks ago a nurse had set her oxygen machine up incorrectly and within 2-3 minutes her oxygen saturation’s where at 25% and she hadn’t even woke up to try and breathe. (Monitor had alarms turned off) dnr also in place. But she was bagged to bring o2 levels back up.
Dr said today she’s lost her respiratory drive. And that given her quality of life we should consider removing the oxygen and that she would pass away peacefully.
Is this true? Would it be peaceful??? She doesn’t waken up much but she does open her eyes slightly at least for a few times during the day. She doesn’t really cough or choke anymore but can at times.
I really really don’t want her to struggle to breathe if the oxygen is removed, she is so strong, she has came through so much and although she just sleeps it’s hard to know when is the right time to say it’s the end. She actually looks quite well and peaceful whilst she’s sleeping, but on the other hand she never really leaves her bed or wakens enough to have much of a quality of life.
Also she’s on morphine patches, she does appear to have some pain when awaking but possibly from laying so much.
I just wonder if her oxygen saturation’s are between 86-91% and it doesn’t matter how much oxygen she gets how long will she survive. Would waiting to a chest infection set in make it worse for her? Does losing your respiratory-drive really mean you just slip away. All your knowledge would be so appreciated. Thank you