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Monday, 9 June 2014

A&E ... with Petal for a change!

Those of you who follow me on Twitter are probably aware that my weekend did not exactly go to plan.  I know - shock, right?

Dropped Petal off at school on Thursday, complete with sleeping bag and toothbrush - it was time for the much anticipated for one night only school camp! Yay!

Phone call at around 8pm - She's fine, but we're on our way to the children's hospital - could you meet us there?

Clearly she's not fine or you wouldn't be on your way to the Children's Hospital!

Turns out one of her pupils was wide and inky black and the medical advice they had received was to take her immediately to Bristol Children's A&E, and if they were more than twenty minutes away, to call an ambulance.

Cue the next door neighbours teenage son settling on our sofa, eating the pizza Mr Manley and I were meant to have been having for tea.  So there's me, sitting in the front of the car, clutching the blanket that was mine but I knew she wanted for herself.  I was pale and silent and still, but inside my head I was screaming and panicking - I knew a lot about the ways in which pupils reflect what is going on inside our brains, and I knew this could potentially be ... well, several very bad things.  I grabbed Mr Manley's jumper as we kissed good bye, not wanting to let go.  As I looked at him all I could think was that by the next time I see him everything might have changed.  

I was there before Petal - I guess Mr Manley speeded up on approaching more orange lights than the three I had noticed.  Fast forward twenty minutes, and Petal and I were sat in resus.  She was worn out, having been swimming twice and walked just over five miles, but was finding the whole thing pretty exciting - oh to be nine years again and have absolutely no sense of your own mortality!  Apart from feeling a little queasy and having a slight headache, she seemed fine.  Her pupil was completed dilated (so none of the iris was visible) and it was fixed - it didn't contract at all, even when a bright light was aimed directly at it, which should have shrunk it to just a couple of millimetres across, instead it remained at about 14mm.

Possibilities included an aneurysm rupturing, a tumour, or a stroke.


I elbowed my way into every differential conversation, being the nightmare parent of patient I'm sure.  I kept my mouth shut, which would no doubt amaze everyone who knows me - silence is not my strong suit, but I needed to know what they were thinking.  Having spent twelve years parenting a child with numerous neurological issues I knew a fair bit, being a big believer in the old maxim knowledge is power.  Add to that my own brush with the neuro bods (still not resolved, and began with a single blown pupil as yet unexplained) and I probably understood more than they realised - in fact, I'm not sure they would have let me hear it all if they realised how much I was in fact following.

They were doing neuro obs on Petal every fifteen minutes (so basically no sleep for either of us) and over the next eighteen hours doctor after doctor came and went, with much scratching of heads and flashing of torches.  Once you're dealing with a child eight or nine hours past their usual bedtime it is tricky to work out if their stumbling as they walk because their brain is on the fritz or if they are simply exhausted.  In the morning Petal completely jumped the queue for the MRI, and although I had explained to her what it would be like (as opposed to the tech telling her 'it'll be quite loud, and you need to stay completely still' - anyone who has been conscious for one will understand when I say describing an MRI as a bit loud is akin to describing the sun as a bit hot.  As I helped her down from the table her legs were shaking and there were tear marks on her face - you know when people say that they wished it had been them?  That if only they could take it away, take the place of someone they loved?  That.  

The MRI was inconclusive but clear of the mass or aneurysm that they were half expecting, so the next couple of hours were spent ruling out a vascular issue (cue ultrasounds and bloods), then the ophthalmologists had their turn, with similar results.  Many of the tests were inconclusive, but the big scary things had been crossed off the list.

By late on Friday Petal's eye had started to go back to normal, and as she didn't have any more neuro red flag symptoms, we were desperate to get home.  After promising we'd bring her back if anything new happened, and with follow up appointments for about five different clinics over this week and next, they agreed Petal would be happier at home, and we were off.

Over the weekend we took everything very slowly, and though certainly worn out and grumpy, Petal was okay.  She went to school today, and I imagine reveled in the attention from students and staff.  The member of staff who had accompanied her to A&E had been in contact via text, and freely admitted when I saw her this morning that it was the most frightened she had ever been.  Petal, on the other hand, was pissed that she'd missed camp.

Fingers crossed it's all over with now, but I'm going to spend the next year or two worrying that Petal is following my path - unexplained blown pupil that gradually resolves on its own but still slips back every so often, and then seizures.  I don't want this life for her - medialert bracelets, nagging worry and regular A&E admissions because she's lost consciousness when she has dared to be alone for an hour or two, trying to be normal.

But as I said - fingers crossed.  Maybe this was a one off - maybe it's over.




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