It’s not over til it’s over…. again

Somehow I managed to get the go ahead for theatre yesterday!

The rash was only a concern to the anaesthetist if it had been diagnosed as anything contagious (I hadn’t been diagnosed with anything – regardless of Austin) or it came with temperature. Temperature?!?! No! I hadn’t had one of those either!

After sitting in my vest by an open window, and some miracle taking place, my temp was acceptable and we were given the nod that the porters would come for me when it was my turn and I was second on the list.

Daddy looked at mummy in disbelief and mummy cried with relief! Whether you agree or disagree with Mummy’s actions of still taking me for my appointment, it was out of sheer desperation to get me my chance! She would have sold her soul. She needed to get me in theatre with Dr Ravi and it couldn’t wait a single day longer.

Mummy knew that once I was in theatre she couldn’t have done any more and the outcome was completely out of her control! She was happy with that, she trusts Dr Ravi with my life and what he says goes. We would take the plan and go with it!

So after I got the go ahead, I changed into my little gown….

I was weighed at 12.9KG which is amazing as I was only expected to be at 10KG for the big operation if I needed it!

Ironically the photo above was not when I got weighed. I refused to stand on the scales and got a little sad at weigh time, but once I was in my gown running around exploring, I found them quite fascinating. 🙈

Eventually it was our turn and off we went, I refused to sit on the bed for them to wheel me to theatre so Daddy carried me and my bag which was checked to see if mummy had brought all the right medical equipment – of course she had – rode on the trolley instead as well as oxygen just in case I needed it. Everyone fully expected that I would given my history!

Daddy held my hand whilst I went to sleep, mummy did it last time, and then they went with their bleeper to get breakfast whilst Dr Ravi had a look at my windpipe!

Mummy and daddy were really kind and didn’t have breakfast because I couldn’t have any and it wouldn’t be fair. Austin had breakfast at nannies too but he had his morning milk sneakily – I stayed upstairs with mummy with water in my milk cup – I knew it wasn’t milk, they think I’m daft!

They said I would be in theatre an hour and half but mummy and daddy had just finished breakfast – I could have been no longer than 45 minutes and the bleeper went off. Daddy panicked, he said it was a different buzz, like an emergency buzz, so they both rushed back to theatre, Dr Ravi was waiting by the door for them and tried to take them into a little side room, mummy felt sick, ‘My God, Is he ok’ she asked, ‘no, no he’s fine’ Ravi replied. ‘I just need to discuss some things with you’

Basically, in short, with less medical terms for you blog readers, my windpipe is still less than 50% the size that it should be! So Ravi did a balloon dilatation. For those who read the blog from the beginning will know I have had one before, prior to me getting the Trachy. They put a balloon into the windpipe and blow it up to stretch the windpipe open to make it bigger. The hope is then that the windpipe will stay that size and not collapse again. Last time I had it, I went back 8 week later and it had stayed open, but 3 days later I ended up in resus because my windpipe has collapsed again and that’s when I ended up with my Trachy to keep me safe and alive!

Ravi also said I had done scar tissue in my windpipe that needed removing.

So, the plan is, to repeat today in 8 – 10 weeks time, have another look and hope that my windpipe has remained open. If it has, that means the balloon dilatation worked (1 in 3 works) and Ravi will remove the scar tissue from my windpipe and I will stay in hospital until it heels. Then I will be sent home.

Two weeks later I will return to hospital for trial decannulation, where they will put a smaller Trachy in, see how I manage breathing for 12-24 hours, then cap the end of the Trachy, monitor my breathing, then remove the Trachy and see how I manage breathing. Obviously I need to breathe ok at all of these stages otherwise my Trachy remains in! If I pass all of these stages then I go home with no Trachy and 12 months down the line they will close the hole in my neck, until then I just have a plaster over it!

Obviously if I go back in 8-10 weeks from now and the windpipe has collapsed again then I will need the full reconstruction which is a HUGE operation and a much longer process with lots more time in hospital including time asleep in intensive care, and Ravi said that experience tells him that it isn’t my time this year and they will try the reconstruction next year.

So, as you can see there is now a plan which we didn’t have before. My windpipe has improved slightly, when it collapsed in late Summer 2016, it was so small they struggled to get the life support tube down, this time they had no problem. In summary I have most likely gone from a Grade 3 99% collapse to a grade 2 50 – 75% collapse. So done improvement but not as much as we had hoped! And we didn’t really get the news we had hoped as the chance of me being Trachy free this year is very slim.

However, it is not over til it’s over and I know we will get there in the end! Mummy and Daddy saw the chance to get it out as a light at the end of the tunnel because Trachy life is hard, and knowing they have it for at least another year possibly is a huge thing to accept. Mummy can’t return to work for another year, they won’t get a full nights sleep for at least another year, they gave a tough winter for another year but when putting it into perspective they know they will manage and are just grateful I’m alive.

One of our favourite nurses Demi who looked after me lots in S1, and now works on theatre recovery, came out to see mummy and daddy whilst they were waiting, she had spied my crazy hair in recovery. It was great to see her. It’s really overwhelming how many great people we have met along the way who are still with us on our journey and genuinely want a good outcome for us! Mummy and Daddy saw Dr Rob too in the canteen, he cared for me when I got my Trachy and is now a consultant in the respiratory team. He asked about how it was going and had his fingers crossed for me. We are lucky that we have had such outstanding professionals caring for us from the beginning.

When I came round and mummy and daddy were allowed to see me, they were greeted with two nurses trying to keep me on the bed whilst I’d got one leg over the bedside trying to abseil down the side and onto the floor to make a getaway. It made them giggle. I was really agitated but mummy and daddy calmed me down, I had a yoghurt and went home.

I slept in the car for a little while and then had a wander around the garden, nobody would have known I had been in theatre a few hours before….

So, what will be will be, it’s not over til it’s over and fingers crossed for round two in 8-10 weeks.

**side note: I have been to the GP this morning as my rash increased ten fold. I have been given the same antibiotics as Austin and so hopefully in a few days we should both be back on top form.

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One Reply to “It’s not over til it’s over…. again”

  1. What a very brave soldier you are Rory, we are so proud of you, my eyes always get wet when I read your blogs, lets hope it is good news for you next time you go back to see Ravi, he sounds like a very nice man, only the best for Rory, love to you all from auntie Lynn & uncle Clarry xx💂‍♂️Xx

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