When I say that, I mean, we've been getting to grips with using CPAP up to 24 hours a day, adding batteries and oxygen to our already overloaded wheelchair, battling to suction cottage cheesy secretions, adding new nebs and new meds and juggling life so she can enjoy it as much as possible.
She's been mostly out of school since the middle of July. Which has meant fun at home, sleep at home, and getting used to having what can feel like unending relays of nursing staff in our house. I am profoundly thankful to have the nurses. But, from being mostly me during must of the day, I am now getting used to having other people, usually two at a time, sometimes four for an overlap, for what can feel like most of the day. It is a big adjustment.
And within that, there have been appointments and investigations, and finally a decision to remove tonsils and hope it improves things. And then dates. And cancellations, and new dates, and more cancellations, and a child who is getting more tired and more unwell and less able to fight. And one tired mother making silly mistakes like attaching oxygen but forgetting to switch it on, or attempting to park the bus on top of a bollard (no children were harmed in either of these examples).
Today is our fourth proposed date, and the second time we've made it as far as the hospital. And it seems 4th time is the charm; so far we have rumours of an ICU bed and a tentative op time of around 1pm. Shame Mog's been fasting for morning surgery, but if that's all we have to gripe about by the end of today, I'll be one very happy woman!
She's one unhappy girl at the moment - I've got breakfast and she's having to make do with Ribena.