Friday 3 June 2016

Post Streptococcal Glomerulonephritis

Sometimes, there's so much to say that it's difficult to stop typing. Other times, there's so much to say that it's difficult to know where to start. The latter is how I've felt for the last couple of weeks.

Post Streptococcal Glomerulonephritis.

That's what the doctors eventually settled on. The good news is that we left hospital on Monday after a unexpected nine day stay, and boy was it good to get home. We did have to go back on Tuesday for some follow up tests, and we now have community nurses coming to visit us twice weekly for the foreseeable future, but for now, Sasha is improving every day.

It's a long story, and although I'll try and keep it brief, I will forgive you if you go to sleep half way through...
Sasha at home on the Saturday; just looking slightly puffy but nothing too concerning
May 2016 will not go down as one of our better months. Sasha had been poorly with a cough right at the start, and didn't eat food for four days. We saw a doctor, who suggested it was just a cough virus, and as Sasha started eating again we assumed she was getting better. Her temperatures kept going up and down, but nothing extremely alarming so we just assumed she was 'under the weather'. After another week of being in and out of school, and Sasha waking up on a Wednesday looking a bit puffy, we visited a doctor at a new surgery (you can read why here). This lovely doctor informed us Sasha had an ear infection; quite a bad one as it happened and we could see it oozing (TMI, sorry!) even though Sasha hadn't complained of any pain. So we gave the prescribed ear drops and thought that would do the trick.

By the Saturday morning, there didn't seem much change, and I set off early for a planned day at BlogCamp in Birmingham. When I checked in back home, I heard that Sasha hadn't been eating again, and whilst I was on my way home in the afternoon, she was actually sick. She did feel like eating again immediately afterwards though, so we thought it was one of 'those' bugs. When I eventually got home, I realised that the puffiness had worsened.

So I called an out of hours doctor, slightly concerned at this stage, even though Sasha herself didn't seem to be. We got an appointment for 930pm; Sasha didn't want to go but I persuaded her and we set off with very little apart from her beloved Terry turtle and a bucket and towel in case she felt sick again. I left the bucket in the car but fortunately took the towel with me as we went in to see the doctor... lucky because no sooner had we sat down than Sasha threw up again, into my towel covered arms. The doctor looked non too pleased, but also slightly confused because all her indicators were reading typical - no raised temperature, blood pressure OK, breathing OK etc. When he heard how long she had been 'off colour' for, he decided the best course of action would be to send us straight to A&E at Watford.

So Sasha was fairly calm and resigned to the 'adventure' as I drove her there, and I tried to say as little as possible as chatting is not her thing. The next five hours felt like days as we waited first on a chair but then thankfully on a bed as they tried to establish what was wrong - an X-ray after the first couple of hours showed her chest to have an effusion (gathering of fluid) so they decided antibiotics would be good. Cue me trying to give our girl, who absolutely never ever takes any medicine, some very strong flavoured white 'stuff' in a syringe at around 1am in the morning. I honestly think she was just too tired to resist; that, coupled with the fact that they told me, (and so I told her), that if she took the medicine they would send us home with the rest of the bottle.

Sasha in A&E, shattered at about 1am, with her beloved Terry Turtle
I managed to get the medicine down her, unbelievably, and spent about an hour rejoicing silently whilst wondering how long it would take them to discharge us. All of a sudden though the doctor returned, saying she thought it may be pneumonia so she needed to give more antibiotics and fluids via a cannula/drip and then transfer us to a ward. That's how we came to find ourselves on a ward at 330am, luckily alone in a room of four beds, and we managed just a brief couple of hours sleep before nurses came to top up the IV antibiotics, test blood pressure and take temperature and oxygen levels.

At this point in the story, I'm already thinking that it's just not going to be possible to keep it brief, sorry, so instead of boring you all in one go I'm going to stop here and keep you waiting for installment number two.... am sure you'll thank me for it later ;)

In all this, I just want to highlight two things; first that our NHS is totally brilliant and we are very grateful for the fantastic care we received (from many doctors and nurses, as it happens), and second, that the combination of autism and hospital brings many challenges, not least in terms of sensory issues and being prodded, poked and spoken to every couple of hours. For any autistic child this situation would be a nightmare so I am so super proud of how well our daughter coped with everything thrown at her. Children are amazing.