Eve stopped Breathing

Went upstairs to dress Eve this morning after everyone else had gone off to school and college. She looked rather weary, but then she often is. Eve only does three days at school because she cannot cope with two consecutive days anymore, her condition is progressive and is progressing. Much as I like to bury my head in the sand and hope they got it wrong.

Anwyay, I moved her to her back sat her up against her pillows and slipped her oxygen off to take her pyjama top off. Usually I can do that and wash her top half before her SATs drop far enough to alarm, But this time her machine alarmed in seconds and Eve's colour drained, she went grey blue, wasnt breathing at all and SATS fell to 80. Eve has apnoea problems anyway so I did the usual tricks to stimulate her to breathe but nothing was happening and the SAts were falling. so I grabbed the phone and dialled 999. whilst I was talking to the controler Eve took a couple of breaths and then slowly got back into a nearer normal rhythm. Her colour slowly came back and by the time the ambulance arrived she was reasonably OK. her heart rate had fluctuated between 170 down to 70 and then back up to 150 whilst she did this, and when the Paramedics were there it was fluctuating between 160-175. Eve has Autonomic dysfunction so her heart rate and breathing control is poor, her brain stem is degenerating causing these problems. But at our last Neuro appointment the neurologist said that because she does not gasp for breath or cough/splutter when she starts to breathe after an apnoea that is probably going to be the thing she does not recover from. That was the thing going through my miond all the time she wasnt breathing and was breathing erratically,

We didnt go to hospital, she was okish by the time they came and the risk of collecting something new from the ward is too great. So I have spent the best part of today with the what ifs! Loking at her and wondering how long, trying to take my mind off her and support my friend whose daughter is still in the children's hospital. Trying to make sense of what happened and wondering if I overreacted.

I am exhausted, scared and feeling very woe is me.
Just needed to get that off my chest.