The end: Back on trach!

There were many many days I believed with every part of me that this would never happen but there were also many many days where I fought with every part of me to get to this point.

I’ve always been of the belief that if you want something and you work hard enough you can achieve anything you want and never had that mantra failed me until the day the boys were born.

Premature birth, neonatal intensive care rollercoasters and tracheostomy life was never in my control and that was hard. An overwhelming amount of time during this past 4 years was incredibly hard reaching points of real desperation but no matter what I did, I couldn’t fix it. I gave absolutely everything and most days I had to dig deep to find anything in me to give, pouring from an empty cup, but I gave, all of me, every single day.

Last year we had some positive news following day surgery that Rory’s airway was looking better than it did but when considering Dr. R’s schedule and experience he felt that it wasn’t Rory’s time and we should wait until this year. Something we didn’t argue with because we have immeasurable amounts of respect for him.

11th March this year arrived. Step 1 of what we hoped would be decannulation for Rory. We arrived in theatre admission to be told that Dr. R was poorly and he didn’t want anyone else in the team to touch Rory’s airway and so we went back home. All of what we had worked towards, that light at the end of the tunnel was very quickly and unexpectedly taken away.

Later that day Covid-19 was declared a pandemic in the U.K. and it soon became clear that Dr.R was poorly with Covid-19, being one of the first medics to test positive. Shock, worry, concern, fear. The guy who was our guiding light, our God was I’ll with this deadly virus the world feared. We prayed for him with every part of us but also we feared that this may have been the end for Rory’s decannulation in 2020, not least because Dr.R might not be able to do it but because this virus meant business and it didn’t seem appropriate to take a tracheostomy out in the middle of a respiratory pandemic.

Months passed and it seemed more and more unlikely. Eventually Dr.R made recovery and called us on his first day in work. His actual words were ‘we have no idea what the coming months will bring so we just have to bunker down, keep well and get through it’ and he was right, the disappointment was huge, but the world was a terrifying place and the virus was bigger than all of us.

We locked down from March until July, and even then only leaving the house for 6 afternoons of nursery before the summer holidays which the boys so desperately needed. It was an incredibly difficult time, especially when the world started moving again and our friends and family were starting to enjoy socialising and trips out and we were still locked down but the need to keep Rory well should the opportunity arise for hospital was absolute paramount and worth all of our sacrifices.

We eventually got a date for day surgery, Friday 24th July. It was really difficult, I had to go on my own whereas Ash and I had always done everything together to support eachother and support Rory who doesn’t comply with any part of the routine. It was also a very different routine to every other day surgery and we didn’t know what we were facing with Covid-19 and we couldn’t prepare Rory for the unknown either. Rory had a reaction to the anaesthetic and eventually he calmed on a huge soft pad on the floor, face down, fast asleep. This was when Dr. R came in and sat on the floor behind the door to give us his findings from surgery. He had done was he said was ‘quite a significant amount of work’ on Rory’s airway but his words were ‘i don’t think he needs it’ to which I questioned if he meant the reconstruction or the tracheostomy and he said both. I could not believe what I was hearing. The nurse sat in with us who has been part of the journey from the beginning was almost as shocked as us. Dr. R said we could go in the following week for a trial decannulation which basically means trying to wean Rory off the tracheostomy and see if he can breathe safely on his own. Could it really be that quick?

Obviously not. As with every milestone we’ve had thus far, there’s a nice brick in the face to follow. Over coming days Rory became unwell. Temperature, working hard breathing, not eating or drinking. I booked him in for a Covid19 screen and alerted the hospital. Dr. R wasn’t on shift and we went all around the houses between Barnsley and Sheffield for almost two days but as soon as Dr.R was aware, he arranged antibiotics and 30 minutes later we had collected them and took the first dose. Thankfully it wasn’t Covid-19 contracted in the hospital and most likely a post-op infection. However, this put Rory’s chance of a trial decannulation back a few weeks and we were right on the cusp of starting school. We didn’t want to miss any of the first weeks of school, there was so much hanging in thin air regarding funding and support for Rory at school and between me and school we had worked day and night to get everything in place as much as we could but we were facing complete unknown. We didn’t know when or if he would get the appointment, we didn’t know when or if he would return to school with or without tracheostomy and with or without support. This made for a very anxious Mummy facing big school and being so close to the finish line yet with so many obstacles in the way.

Once Rory was well, I got in touch with Dr.R and asked that we could get in for the trial decannulation with enough time for us to get support in place before school should we need it, or for us to get used to the new ‘trach-free’ Rory should we be lucky enough to be successful. A few days later, we had a date. 24th August 2020.

The ENT team were really supportive in helping us to make adaptions to the usual decannulation plan that would support Rory, including allowing Claire to come to our house and do the usual trachy change routine to put the smaller tube in before we went to the hospital so that nothing ‘negative’ was happening to him during his stay. Claire arrived at ours at 7am to do the change so that we could get to the hospital for 10am to check into the ward. It had been about 3 years since our last overnight hospital stay and it is much different trying to keep an active 4 year old entertained for 3 days in one room with the communal areas and playrooms closed because of Covid-19.

Rory wouldn’t allow the oxygen saturations monitor on his finger or toe long enough to get a reading and pushed any nurse or Doctor straight out the door and closed the door on them and after above an hour of me rolling around on the floor trying to get it on his toe with a sock over and bribing him with Haribo to keep it on, he got so upset about it that he was sick.

My mobile rang. I ignored it because it was an unknown number. As i looked up at the window, the two ENT nurses were looking through the window. It was them calling. The conversation over the telephone because Rory was too distressed to let them in and nothing was going to plan was this; perhaps we should abandon the trial and look at some kind of specialist therapy to support Rory to be ready for a hospital stay and then try again, maybe in 6 months, a year.

A new level of desperation. How could we be so close to the end, yet again the light at the end of that tunnel was almost taken away.

We struck a deal. I wasn’t prepared to leave the hospital until we at least tried. I could happily pack up and leave if he couldn’t cope, but how could I agree to him keeping the tracheostomy longer without knowing if he even needs it, Dr. R was quite confident that he didn’t need it. We had to at least try right?

We agreed that we would take each of the steps in his sleep (capping off and then taking the tube out and covering the stoma with an airtight dressing) and that I would stay awake through the night and sneak the oxygen sats monitor on his finger and provide an hourly number to the nurse through the night. I’ll be honest, this was hard. Really hard, staying awake through the night wasn’t hard because I was watching Rory breathe and willing him along with every breath, but the days were long stuck in an en-suite bedroom with just Rory, a handful of toys, an ipad and seriously heavy eyes.

He was good as gold and went to bed like he does at home, no drama, I popped the cap on his tube as the nurse watched through the door, I anxiously waited for him to cough or gagg or struggle, but he didn’t, it was a seamless transition and he just kept breathing. His first record was 97. He was allowed to be anything from 93 – 100. Following that he was 98 and 99 throughout the night. I couldn’t believe it.

Morning came and the ENT nurse said he had done well and we could take the trachy out. I stopped in my tracks. I was anxious. The thing I have focussed on 24/7 keeping in his neck, I was perfectly ok to just take out. I asked what would happen if he couldn’t cope and the nurse said he has done the hard bit and he would be fine. I had to take her word for it. I asked if she would stand outside the room and she said no, very calmly she said ‘just let me know when you’ve done it’ and so i followed him around with a pair of scissors for a while trying to sneakily chop it but he wouldn’t let me near. I managed to trick him with a bandana bib and snipped it from behind. I didn’t take the tube out though, I thought i would let him do it and and just like that he coughed and pulled it out. He looked at it and made a noise as if to say ‘oh crap’ and so I quickly said ‘put it in the bin’ and without hesitation he ran over and put it in the bin. And that was that for the day, waiting until night time to monitor saturations with the airtight dressing on.

As the day went on I watched in awe, my boy without his tube. Dare I believe this was actually it?

Night came and he fell asleep. I put the dressing on and I sat up for my second night of hourly monitoring and he continued to boss it 98/99 all night long.

That morning the ENT nurse came and the ENT Dr and they discharged us. Tracheostomy free.

Throughout the week the most emotional moment had to be right as we were packing our things to leave when suddenly it got busy outside our door. Word had got round that Rory had bossed his decannulation and an army of familiar angels surrounded our doorway.Nurses, play workers, housekeepers and Doctors who have been part of our lives since the start.They had been keeping checks on us and as they were on shift they came out of their way, some of them from different parts of the hospital, to come and wish us well. This isn’t a routine on discharge, they had all happened to have the same idea and wanted to wish us well as we left. It was more than a job to these guys. They cared. They really cared. When Rory had his tracheostomy in 2016 and we lived in hospital for a while, the staff on S1 and in ENT and Respiratory in particularly became our family. It actually makes me sad to think these people might not be part of our lives any more.You made this stay so much easier having to face it alone. Familiar faces. A deep rooted care. A REAL love for the job.I’m so grateful beyond measure I could share that momentous occasion with people who started the journey with us in the beginning. I’m so grateful you saw a positive ending when you shared with us that very dark and scary beginning.You wouldn’t have seen me cry my heart out as you closed the door. But I did. Not sad tears but just an overwhelming emotion for how I can ever thank the wonderful team of people we have had supporting our boys from the beginning. I know lots of you read our blogs. Forever in your debt!

Thank you to everyone, from the GP who referred us to the IVF clinic, the staff in ACU, Jessops, NICU, Barnsley SCBU and nurses who have supported us, Sheffield Children’s Hospital, ambulance staff, paramedics, Embrace team…family and friends and colleagues and blog readers too. Everyone. Thank you.

We arrived home and faced our new normal. I have to be honest and say that I overlooked the impact of this for Austin, he has grown up learning how important Rory’s tube was and all of a sudden it was gone and Rory had a hole in his neck. He cried and actually asked me to go back to the hospital and get Rory’s tube. We explained and he got used to it, but i’ll always wish I had found some headspace for Austins emotions too. I just felt that he would be loving life with Nannie and Daddy all to himself and never really thought about how he would handle a trach-free Rory because I had never really let myself believe.

In the week after we had sounds we had never heard before, giggles, crying, hiccups and words. I was in awe of every new sound.

He was so much more confident and happy in himself. Leaving the house was so easy, no medical equipment. The risk was so much less. We did lots of things; park, funfair, had friends round to play, Peppa Pig land. We didn’t feel so uptight about keeping so safe as to compromise that chance he might have had to get the tube out, because the tube was out. We enjoyed making new memories. Doing new things. I found a new lease of life and confidence too. The biggie though had to be starting school.

The day my 2lb IVF Miracle’s defied every odd and walked confidently into big boy school without me. That time my little tracheostomy superhero bossed breathing all by himself a week before school and just waltzed down the path with no medical equipment.That time Austin was the best big Brother and wanted to help Rory Georgie. He carried two bags, two book bags and two lunches into school with a big smiley face and a rucksack full of confidence and self-belief. That time I cried the biggest happiest proudest tears of relief that after the hardest 5 years of fighting my biggest fight EVERY SINGLE DAY for my babies, they finally made it. That day will always feel like my biggest achievement.

And they have done this every day for a week and hopefully that will continue. We have a review with Dr.R on the 24th September and hopefully if everything continues to go swimmingly, this might be the end of the rough medical road for us.

With that in mind I have decided that the blog will come to an end. It served it’s purpose as a communication tool for family and friends and grew into something wonderful. It has supported me personally for years allowing me a place to offload, a therapy. It has also supported so many other families facing similar issues and the support networks have been invaluable. I aim to publish the blogs into a book in the coming months (if there is anyone reading who can support with this – shout up) and then I will leave it as a footprint on the world, our journey, a keepsake, a wonderful reminder for Austin and Rory that no matter how big and strong they get, they must never for a second take their precious life for granted.

I also have to respect that as Austin and Rory get bigger, they may not wish for their life to be so present on social media in the way that it is. When I started this blog over 4 years ago, it was never intended to be read all over the world by thousands of people. Organically it turned into that and i’ll forever be grateful, but I think we are nearing the end of what has been an incredible journey and the starting of a new one, hopefully one which will mean I need less blogging therapy, one where the boys can be just like their peers and where I can return to work in a career that I worked hard for and we can almost be that family we imagined we would be when our final round of IVF was deemed viable in 2015.

Miracles do happen.

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