Daisy has not been having the best of times over the past couple of days. The infection I had hoped was just the general lurgy turned out to be a bit more serious. She woke up on Thursday morning and vomited bile everywhere, her tummy was distended and the blood cultures showed she had a bacterial infection in her bloodstream. Thank goodness an xray showed that the distention was not the feared toxic megacolon which we dread. She had an awful night but after a few infusions of vancomycin and other antibiotics she turned the corner. Thank goodness the decision was made to use vancomycin which is normally saved as a last resort as the bugs in her bloodstream mutated to an active MRSA infection. We have hopefully got things under control now but the issue is whether it was her line which was infected or bacteria leaking from her gut (or both). She has turned the corner but the microbiologists are keeping a close eye on her blood cultures to make sure we have zapped all the bugs...

I tend to have my clearest thoughts and ideas at around 3am as I am normally awake at that time dealing with Daisy - it occurred to me at 3am on Friday morning that if we turned up for our outpatient appointment at Great Ormond Street in a week's time her gastroenterologist might not be completely up to speed with what has happened since she was transferred back here (yes I know you woud assume that the docs would keep them informed but I have learned to never assume anything in this game). I rattled off an email to his secretary and got a reply pretty quickly - the good news was that instead of us traipsing up to GOS for outpatients with all the hassle of ambulances, nurse escorts and taking enough TPN, he is prepared to come to Queen Mary's to see us. Sort of like a state visit! The bad news is he wants Daisy transferred back to GOS as clearly the treatment with steroids is not working. I am just hoping that they cannot free up a bed until after Christmas - we have to go to Chase at Christmas, it's the only way we will all be together as a family. Ironically the active MRSA infection will probably provide a suitable delay so that they will decide it is easier to wait until after Christmas.

Daisy was brighter today and she had a lovely day playing with Andy and Jules while Xanthe and I met up with friends to make Christmas wreaths. Poor Theo was left at home with his latin homework! I'm going to to home to sleep tonight as I need to build up my sleep credits again again. I'm waiting for her pain meds to kick in then I can get going as I'll be back here before I know it/

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