Is bigger better?

As we drove down the same stretch of Penistone road that Austin part made his entrance into the world, Mummy and Daddy shared their anxieties about today’s operation. They weren’t expecting a positive outcome because the ship had sailed with regards to decannulating me this year, we were getting far too close to Winter to even think about trying now, last time, 8 weeks ago, the outcome of the operation was less of a focus as Mummy and Daddy were more concerned about it being cancelled because of the rash that I had. This time they were both really anxious, but together they decided that whatever happens, they will just deal with it, but that now we start living life because we have spent so long giving me the best chance to lose the trachy, hiding from bugs, holding us back, not mixing during winter months, and all the rest of it, and it hasn’t got us anywhere with regards to losing my trachy and so we should just get on with it now and accept that we cannot control it, we cannot make it happen any quicker, we did EVERYTHING in our power as a family and it didn’t make it happen at all.

We had dropped Austin off just ten minutes previous at Nannies and soon we arrived at the hospital. I know it, I know it well, and i’m not scared. I’m a big brave boy and I skipped my way into the hospital with a smile, because I am Rory George!

The nurses came to check on me and did all of the observations, they were happy. The Doctors and anaesthetists came, all happy. My main man Ravi (Dr Ravi officially – although we just call him Ravi) came and explained that he had an apology to make, some of the information he told us about Rory’s windpipe following his last operation, was not actually accurate, it was about another patient, he has accidentally mixed up some information, we love Ravi and trust him implicitly and so didn’t even question it, telling him it wasn’t a problem, these things happen, and leaving it there. Except afterwards Daddy was pondering, what if that means that really I am ready for decannulation and my windpipe is actually ok. Dare we think?

Ravi asked Mummy and Daddy what they wanted to do, they have a really good working relationship and trust eachothers capabilites. He trusts what mummy and daddy think. they told Ravi that they trust him implictily and will be led by him. They want the trachy out as soon as possible but don’t want to rush if Ravi doesn’t think he is ready. That was enough for Ravi to go with but of course it all depends on the outcome of the operation.

We met another little boy from Barnsley with a trachy, as far as we are aware there are 3 of us. He is the eldest at 7. He was a real live wire and reminded mummy and daddy lots of me. We did a little jigsaw together although I think  he thought I was uncool because I was a lot smaller.

I ran off to play, smiling and happy and Daddy got teary eyed about me growing up, mummy joined him and they briefly shared a moment in the waiting room before the anaesthetist arrived to check on me.

I was so good at waiting, playing and running around in my gown. I kept tapping my tummy to tell Mummy and Daddy that I was hungry, i spotted my snack box but then mummy his it and i couldn’t find it again and forgot to keep looking. Think mummy was relieved.

Eventually it was my time to go, Mummy kissed my cheek, told me she loved me and that I was special and precious and big and brave, she squeezed Daddys hand because she knows what he was going to do isn’t nice and then Daddy took me to theatre to be put to sleep. Mummy did this when we were super small, but now I am quite big, Daddy goes in case I struggle. Mummy waited on the other side of the theatre door for Daddy to come out, before going for breakfast, because they didn’t eat either – to be fair to me – because I wasn’t allowed to eat for 8 hours before my op. Usually mummy is only waiting a couple of minutes but she was waiting a while, she began to panic that something wasn’t right, little did she know, they just weren’t ready for me yet and me and daddy were reading books whilst we waited for the anaesthetists.

Mummy and Daddy had their breakfast and made their way back to theatre waiting for my buzzer to go off. It was a much longer wait than last time, and usually when the buzzer goes off, the nurse comes out within minutes to take mummy and daddy through to recovery.

This time the buzzer went off, mummy handed it in at the window and told them she was here and 30 minutes later was still waiting. She had been stood by the theatre doors, waiting for them to open, banging her head on the frame, thinking alsorts. Daddy head in hands in the waiting chair. Mummy couldn’t wait any longer and went to ask what was going on, soon the nurse came out, except she told them that I wasn’t ready for them yet and would come out again when I was.

Mummy was really worried, and fought back the tears.

Soon after the nurse can me and took Mummy to my bed, I was unsettled, wriggling all over the place, the beep of the monitors that is all so memorable to mummy and daddy, taking them right back to the hard days of intensive care, Mummy went to suction me and realised, everything was different. I had a different tube, different catheters were hooked up to my machine, there was different equipment on my bed. It was all. different.

The nurse quickly explained that Ravi had ‘upsized me’ and that he would catch up with mummy and daddy on the ward to explain how the operation had gone. Mummy had to shelve that and get my emergency bag organised. She couldn’t cope with being responsible for my airway whilst my equipment was all unorganised.

So she explained to the nurses, who aren’t the most versed with tracheostomys because they rarely come accross them, exactly what we needed and she began to set up her two emergency tube changing kits, the new size and a size smaller, new sized cathers, smaller catheters for the emergency tube and helped the nurse to work out her new numbers, measuring the tubes, working out how far to go down when suctioning me. It was all new and alien but Mummy soon took control.

Mummy and daddy knew that after today’s operation there would more than likely be blood coming out of my breathing tube and so they tried to prepare, both knowing that it would be difficult and take them right back to when our hearts were flooding our lungs in the early days if neonatal intensive care and we were given the ’24 hours is crucial’ message’, for Austin, and mummy and daddy spent the next 24 hours praying blood didn’t come out of his tube, watching through the incubator, expecting the worse. Well, today, blood did come out of the tube, lots of it, bright red blood. Mummy had to really divert her inner thoughts because she found it really difficult.

The message was, we couldn’t go home until the secretions from my tube ran clear and Mummy had done a trachy change with the new size. Instantly she felt sick about that. Mummy has done 90% of our tube changes, but didn’t think she could mange it straight after surgery when blood was literally coming out of my tube every time I coughed. She also spotted blood in my neck crease, ear and gown, so it must have been a little gory to say the least. Equally, mummy wasn’t about to let any of these things stop us from going home.

Mummy gave me a gingerbread man at 12:30, as soon as I was able to eat and I gobbled it all up. the other mummys and nurses were all commenting on how brave I was because their children were really sad and I was smiling, with my gingerbread man.

We went back up to the ward where i continued to graze my snack pack and Ravi came to speak to us.

He said that Mummy was correct in her observations, my windpipe had collapsed again, and was currently at 30-40% collapse. A huge improvement on the 99% collapse before I gained my trachy and slightly better than the 50% collapse 8 weeks ago, but the balloon dilatation hadn’t worked, because my windpipe had collapsed again in such a short time. Ravi said that although I am more than big enough and well enough respiratory-wise for the big operation (I weighed 12.7kg 8 weeks ago, today 13.6, an amazing gain for a trachy child and bigger than the 10kg Ravi needs for the op) at present raavi would need to do 2 grafts. Which is a big deal. Ideally he wouldn’t do any, and if needed he would prefer to do only one, and so he would like to leave it until next year to try this whole process: have a look, make a plan, hopefully decannulation being the end product.

Ravi explained that because I will be having the trachy a while longer than planned, he has put a bigger tube in. He told Mummy and Daddy that he had cut away all of the grannuloma in my airway and made it bigger, thats why it is bleeding, he found it tough to cut it all off, but still found it difficult to get my breathing tube in, especially as it was now bigger and so he was happy for Mummy to go home and do the bigger tube change in 10 days time at home, when I have healed, putting a small one in and coming straight into hospital for Ravi to help if she can’t get it in. No pressure.

Mummy won’t be sleeping until she has done it. Just looking at the size difference in the tube and thinking about doing it makes her feel sick.

I have been ready for a bigger tube for a while because my airway has grown, hence why I can make noise now, but because Ravi wanted to get my tube out altogether this year, he kept the tube size smaller as it is easier to size down when it comes to weaning me off it, one less step, and so only now that we know I am keeping it,  has he decided to give me the bigger tube, except now I have no voice at all, just like the early trachy days. Mummy and Daddy have found this really hard today and I am confused, when I shout Dad like i used to, daddy can’t hear me because no sound comes out, which also means mummy and daddy are going to be more anxious as they cannot hear me cry or shout now, whereas my ability to do that since I have grown has given them more piece of mind that they will hear me when there is a problem. Mummy feels like it is a huge step backwards.

Eventually my tube secretions ran clearer and although they weren’t completely clear, the nurse rang Ravi who said he was happy if mummy was happy, which she was, and off we toddled home.

Nobody would have known I had been in theatre as I ate, played for hours, ran around playing and eventually went to sleep after my eventful day.

Mummy changed my tapes and cleaned my stoma, cleaning up all of the blood and keeping me clean from infection. She found it difficult because my  stoma has always been super clean and today it looks like it did when I first got my tube, sore and blood stained.

Thank you to everyone who sent their well wishes today, everyone who has helped out with Austin and Beau and everyone who had their fingers crossed that I would get my trachy out this year. It wasn’t meant to be. We are facing another difficult winter with my tube, but without it, I would be dead.

Its important to remember all of the hurdles we have jumped, challenges overcome. When we were born, the expectations for us weren’t great and so really, in the grand scheme, we have moved mountains. Mummy and Daddy are so proud of us and this set back is just another challenge. Never Give In!

#2019decannulation #letsgoagain

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