Plot twist!

After such a wonderful day watching the Tour De Yorkshire – the weather shining, Austin woke up from nap time head to toe in a rash! Mummy thought it could be a heat rash as it was quite warm in the car and we had flushed cheeks in the car. She had considered slapped cheek syndrome too but sidelined that because surely we weren’t that unlucky to get ill 4 days before my big appointment! Surely 🤔

cop

We went to Nannies house where it was cool, stripped off and cooled down, the cheeks went, the rash calmed, but it was still there!

We carried on as usual. We should have been going to Poppy’s Holy Communion in Liverpool but Mummy double booked with the Charity bike ride, which we couldn’t do in the end anyway, and so we ended up spending the day at home, in the garden.

Mummy, Daddy and Grandad worked hard anyway and got it ready for us…

Just our sandpit, water tray and mud kitchen to add, when safe for me as Trachy kids should be super careful around these things!

Sunday came and it was soooo hot! We spent the day enjoying our garden but also, Austin’s rash got worse and he had a temperature too.

Some of Mummy friends mentioned that it could be slapped cheek and it made her think again. Mummy held off getting any medical advice because 1) she tried not to take us and clog up the system if it can be managed at home 2) she didn’t want to admit and ruin the chances for my big day 3) she thought it would most likely be nothing to worry about as he was well in himself

By the afternoon alarm bells were ringing and we rang for advice, we were then sent through various channels before finally the GP sent us to A&E with suspected Scarlet Fever.

Mummy was struggling inside. She is cool as a cucumber usually, she can piece my airway together in the supermarket without so much as a raised eyebrow, she nurses us through life support, numerous operations, serious medical conditions, yet the rash was too much! The light at the end of this long long tunnel was no longer there and even Daddy couldn’t fix it!

Mummy drove Austin through to A&E trying to keep her cool but the drive down the M1 to A&E brought flash backs of the last time she did it, with me in the car, when my windpipe collapsed and i stopped breathing on her in her car and had to be taken straight to resus. She just drove, holding back the tears but just as she was driving up the slip road, Austin had nodded off. She knew it was just because we were in the car and he was sleepy but it was too similar to when she drove me there and I closed my eyes because I wasn’t breathing anymore. She pulled over to wake him, put peppa pig on her phone, wedged it under her headrest in the car and kept driving, luckily Peppa kept him awake. And mummy arrived slightly chaotic in emotion, but managing all the same.

The Drs and nurses were fantastic and we were sent home with suspected scarlet fever and/or viral rash due to ear infection and antibiotics to help. Although everyone u secretly hoping it’s just prickly heat!

Bit of a difference and mummy hates not knowing for sure, Austin can’t go to nursery just in case it is Scarlet Fever but both are a risk to Me anyway.

Mummy drove home feeling relieved but also flat because my big chance was slipping out of our hands! Very quickly!

By evening, I too had a rash, but with only one dose of antibiotics Austin’s rash was disappearing, fast.

Austin had yet another unsettled night, settling only on the Nursery floor. Mummy and Daddy fighting to get medicine down him and no doubt keeping the entire street awake as everyone had their windows open because it was all so warm. I just lay in my cot watching and listening. Thought I’d best keep calm and not add to the drama.

Monday came and Daddy went to work. Nap time in the car was fun, 1 up 1 down, swap and repeat. Mummy had no helpers as everyone was either away on holiday or working. So she had to entertain me in the front whilst Austin slept in the back.

We played good as good in the playroom, hiding from the sunshine, trying to get better at the speed of Lightning.

Wondering what our plan of action should be, Mummy has thought of nothing else! Praying for a miracle overnight! We should be at The Children’s Hospital for 7:45am and we are hoping I am well enough to be there, and then that I pass the pre-op and the anaesthetist is happy enough to do it.

That’s the first hurdle. The outcome of what they find almost seems so unimportant now, because at the moment it’s unlikely they will even put me asleep to look.

And if we have to reschedule and put everything back, that takes us closer to winter where there is less Chance of getting it out and equally if it’s out, more risks for keeping it out, should my trach free early days be at that time of year.

Mummy tried her best to find some perspective and she and daddy did the ‘team talk’ they always do when something like this happens, ‘what will be will be, we can’t change anything, in the grand scheme of things it doesn’t matter, it could be worse’

Truth is – we are all feeling a bit broken.

Fingers crossed for a miracle to happen overnight!

🙏🏻

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