Saturday 1 October 2016

Hospital update {Final, I hope}

The sun is shining and the week is ending well (if I ignore the fact that the projector I use for my PDA courses just wouldn't work yesterday in front of my group of 14... oops). I thought now would be a good time to update you all on the outcome of our hospital saga from when Sasha was ill with Post Streptococcal Glomerulonephritis, back in May (if you missed that story, you can catch up here).

Sasha at the train station

We had to make a final trip into London for a check-up of her heart at the Royal Brompton hospital this week. I'd had to postpone this follow-up appointment once already as the first one we had been given was the day we needed to move house over summer, and I figured too much stress at once would be a bad thing.

That gave me extra time to try and find out what would happen at this appointment... except it still wasn't enough time, as it happens. Through the wonders of google, I'd realised that the outpatients department is actually in a totally different building to the original ward Sasha had been in. I knew that new people and new surroundings would be difficult for Sasha, and I had no idea what kind of follow up testing they would do. Despite leaving a couple of messages and trying to speak to the right person, I was none the wiser when the day came round sadly.

Luckily, we hit a good day in terms of Sasha's mood. That could well have been down to the fact that she had a full day off school (the appointment was early afternoon but we needed time to travel there), so the novelty factor and chance to relax a little bit at home before we left probably combined to help keep her anxiety levels low. She wasn't at all keen on the idea of travel (never is, car or train, all causes extra stress) but I made her a little visual timetable for what we would have to do - car, train, tube and a walk.

Sasha in Kings Cross tube station

The journey went remarkably well and so we were ahead of schedule when we popped up at South Kensington tube station. Sasha must have seen a sign, as she immediately asked if we could go to the museums. I felt it could be cutting it a bit fine, but I didn't want to dampen her enthusiasm, so of course I said that we could manage a quick trip round one. Sasha chose the Science Museum, as she thought there may be a school trip to the Natural History museum this year, and anyway she had fond memories of the Science Museum from when we did a sleepover there. Yes, a sleepover. That's another blog post on my very long to-do list!

Sasha at Science Museum London
Sasha having loads of fun at the Science Museum

We had a brilliant 45 minutes in the science museum; not really long enough but Sasha's limit would probably be an hour anyhow, so it was a great unplanned addition to the day. I know that this contradicts when I say that she likes to know what's happening, and to have everything planned, but that's one of the characteristics of PDA as opposed to someone with classic autism - spontaneity and novelty can work well on a good day.

All had gone well up until the last 10 minutes in the museum, when Sasha missed a step on a metal staircase and only avoided bumping to the end by clinging on tightly to the handrail. A grazed heel and a few tears was all that happened, amazingly - and then I trumped that by falling flat on my face up onto the pavement when we went back outside to hail a cab. Three trips in a day! Sasha excitedly proclaimed (as in, her trip, my trip, and our trip to the hospital). Despite being worried about me, the humour took over thankfully and her good mood prevailed.

Just as well, because we still didn't know what would happen when we got to the hospital. Luckily, the Royal Brompton Outpatients Paediatric department is well set up for children, with a giant Connect 4, table football, model train set, colouring table and plenty of books in reception. We passed the time in between tests by playing with all of these in turn.

Paediatric Reception Royal Brompton Outpatients

A nurse called us in to do basic blood pressure and oxygen level tests, then we were sent back out to wait... a different nurse/doctor called us in to do the Echo (gel on chest, but like an ultrasound), then we were sent back out to wait... another different doctor called us in to do the ECG (Electrocardiogram - I was quite impressed that Sasha remembered that word), then we were sent back out to wait...

I deliberated about including these pictures which are of course quite personal for Sasha, but in the end I have because I know when we were trying to find information about what would happen before the appointments, images like this which give more of an idea would have been so useful. If I can help just one child by including them, it's worth it.

Shows girl having Echo heart scan
An Echo heart scan

shows girl having Electrocardiogram ECG
An Electrocardiogram
Finally, a doctor called us in to tell us the results of everything together.

It was good news, yay! Sasha's heart seems to have repaired itself well - still a minor leak but we were told that it is now functioning as good as the next person's (hopefully not the next person in that hospital, was my instant thought). Of course I knew she seemed to be pretty much recovered but it was so good to hear that there was no lasting damage - bodies really are amazing.

On the way home I stopped briefly to grab one of these at South Kensington Tube station. Sasha wasn't interested; trying new food is not her thing. It was the highlight of my week though, I suggest you go and try one asap!

waffles at South Kensington tube

There were times when it all got a bit much for Sasha, waiting and travelling in particualar, as you can see from these photos. She was a real star though, and I would definitely call it an amazing achievement to have been through all that.

I'll leave you with a picture of the name badges which were all proudly on display on the nurses/doctors in the hospital - if you haven't heard of the inspiring campaign that is #hellomynameis, and the amazing lady Kate Granger who initiated it but who has now sadly passed away, then you should read more about it at

Hello my name is badge

Did you know I'm on these other social media channels where you can keep up with our story?