I used to remind every new nurse to make sure I was told about any procedures etc so that I could choose to be there or not and I also told them that it didn't matter what time the procedures were done (as they try and do most over night) because I wanted to know what was going on and when.

I also flip through the notes too, they don't like you doing it, but hey don't tell me the full story once then I don't trust you telling it to me in the future. It makes me feel really glad that Brendan's surgeon is straight up. I told him don't beat around the bush we've been through so much crap just tell me like it is because there isn't always a silver lining, the PICU Dr's got the idea pretty quickly that I want to know everything and not have it glossed over.

You can do this, you are doing a great job so far. Be strong and remember that YOU are her mum and YOU are also her advocate. Trust YOUR instinct, it's got you this far x