Tomorrow is a big hospital visit day. First up, at 8am, we have a visit to a new eye doctor. The Noodle has a ptosis (droopy eyelid), Marcus-Gunn jaw wink syndrome (which means that when his jaw moves in certain ways one of his eyes winks in a neatly matching rhythm) and problems with elevation in the affected eye. Eye doctors find him the equivalent of a day out at the Ekka*.
However, they also cannot decide what to do about the various issues. He has his eye patched for two to four hours a day (honest guv'nor, it is two hours, it just seems shorter...). They intend to do surgery at some time, but we can't know when, since his underlying mitochondrial condition might be responsible, and also has implications for anaesthesia. So tomorrow we go to face another doctor to answer the same questions, to watch the Noodle put through the same tricks and to hear the same answers back. We have been most obliging to the various doctors, attending student learning sessions and exams, going along to grand rounds and being gawked at by students, residents and diverse other doctors at normal appointments. I am frankly getting the point of wondering why they bother with all this information sharing, since none of them quite seem sure what to do anyway. Oh yes, I know medicine is not precise, and I very much appreciate a doctor who can say 'I'm not sure' rather than a doctor who pretends to know what they are doing when they don't, but it would be nice to hear something definite(ly good).
The other appointment should be more fun (and yes, these kinds of things do alter your definition of what 'fun' might be). We'll be going to the rehabilitation clinic at the Other children's hospital. The rehabilitation doctors and the crew of physios, OTs and the guy who does the plastering and AFO building are amongt the best collection of health professionals we've come across. They got the Noodle walking again, with the help of the good people at Montrose Access of course. But they also just 'get' him as a human being. Unlike other specialists (and yes, eye doctors and neuroscience types, I am talking about you), these people always see the kids as real people, with desires and frustrations and families and so on. Actually, the best of the neuroscience types are pretty good here too, because tracking down neurology symptoms is a pretty wholistic kind of process. But the worst of them, my goodness. You'd think that they'd spent their entire youth locked away in a series of rooms thinking as hard as they could about abstract concepts without actually discussing anything other than medicine for about fifteen years.
But we haven't had a big hospital day for a few months. The only time I've been inside either of the hospitals recently has been to pick up the Noodle's supplements at the pharmacy. I'm grateful for the break, but I'm also grateful for the level of care and interest that doctors and nurses have given the Noodle over the past years. Mostly. Sometimes I really want to smack a few smartly on the cheek, in a metaphorical and not at all against the hospital-policy-on-violence kind of a way.
*The Ekka is the Brisbane version of an agricultural show with rides and exhibitions and so on. It takes place quite near one of the hospitals.