Its now 9pm and this update comes straight from the hospital. We received a call at about 5:30pm to advise that Ellie was yet again deteriorating and breathing heavily.
She has stabilised but is now on a sedative and NAVA again (one step away from intubation). Her chest xray is showing more collapse on her lungs again.
Deb and I are both here and waiting to see how she goes over the next hour before deciding if we stay or not. Her nurse and doctors are not worried for her immediate future but she really needs to turn a corner of she is going to avoid full intubation and sedation eventually. Pneumonia is one thing that is suspected but it will take a couple of days to see what is going on.
As always, thank you so much for your untiring support and prayers, we are becoming tired with the length of this journey so we really value that you have all been so faithful in your support.