After my daughter had had her emergency surgery that Sunday morning, I’ll never forget her surgeon walking past me as he was about to go on giving me a salute and a nod, the day before he had said to me he hoped she could wait a couple more days – clearly she couldn’t so he got the short straw as was on call!

Many times after we have joked about this, he’s a wonderful man and someone I’ll talk about more further into this story.

When we finally got to see Ava, it was now an acceptable time of the morning, we went to PICU and she was ventilated, but she wasn’t sedated. She was very drugged up on morphine and she had some stents in her nose.

She had some thing called Cohanal Atresia, which basically means the back of her nose was fused shut, with CHARGE syndrome this is common and poses a big risk to children when they are first born – hence the lengthy resuscitation.

The ENT surgeon burnt through a membrane and places stents in her nose to keep the airway open. This was to stay in for 6 weeks and then have operations every 6 weeks to stretch the nasal passages. The way her DNA and genes are made up means her body will close the nasal airway, until eventually medical intervention has played its part and it will stop.

She managed a day on a ventilator and she was breathing over it! So they took her off and then transferred her to Peter Pan Ward.

Was this it? Was she fixed??