Please forgive any typos in what follows. I am writing this on my phone, perched precariously half-on, half-off R’s hospital bed. R is sleeping but her sleep is not sound. She needs to know that Mum is right next to her. When I started this blog, I wanted to share the good things that happen. I wanted a place to save these to leaven the days when the not-so-good things happen. Good things do still happen. R’s new carer (awkwardly for this blog, also R – so I’ll call her C) is a very good thing. R and C spent the first week of the Easter holidays shopping, going to movies, taking selfies in their sunglasses, generally having a good time. R enjoyed the brief hiatus from the seizure clusters that brought her back to hospital over a week ago. In a few long months, I have gone from feeling confident and expert in R’s care to feeling vulnerable and really inexpert in the management of her epilepsy. We have learned that epilepsy in neurological disorders like Rett syndrome is notoriously hard to control and that bad as things are at the moment, the neurologists are pessimistic about any improvement. We have learned that R is very sensitive to several of the medications commonly used to arrest long seizures and clusters of seizures. R hasn’t had a seizure in 48 hours (another good thing) but she isn’t going home yet because she has stopped breathing too often for her doctors to feel confident about discharging her. Oxygen monitors are in too short supply for us to be given one to take home. (Politicians – for all your claims about increases in funding for the NHS, I’m afraid to say that the benefits are hardly being felt in paediatric services. This might not win you quite as many votes, but in my view being able to provide machines to monitor a child’s breathing overnight should be just as much of a priority as funding expensive new drugs to older adults. Just a thought). So here we are. And here we are likely to stay for a little while yet.
Update (6 May 2015)
This morning G phoned a charity called The Daisy Garland. This charity supplies oxygen saturation monitors to children with epilepsy who need them. They generally meet to consider applications 4 times a year, however, G explained our circumstances and the lovely lady at the end of the phone said that they might be able to consider R’s case as an emergency. This afternoon they emailed to say that our application was successful. With a fair wind, we should have the monitor on Friday and R will be able to go home. A really, really good thing.