UPDATE:
I’m sorry I didn’t post yesterday, but very soon after my last update things took a turn for the worse and we spent the day on a knife-edge as our granddaughter needed a huge amount of help with her breathing (for the medics, she was profoundly blue after desaturating and was hypoxic). The details of the episode were alarming and our daughter told us that things were looking ‘pretty bad’.
Amazingly, after many hours and many litres of oxygen, our little fighter eventually got her colour back, perked up, and even watched a film for a while. Today (night time in NZ) she’s had a similar episode where she desaturated, but not as worrying as yesterday’s. So, although she’s still on quite a lot of oxygen it seems we’ve moved two steps forward and one step back.
Thank you everyone for your prayers and good wishes, which are very much appreciated.