There seems to be lots of trial decannulation happening in the trachy world, or so Mummy can see through the posts in the tracheostomy UK Support Forum. Its an emotional time for any trachy patient or parent, whether it is just out of interest, anticipation, education, or in sharing the common understanding of the ‘trachy life’ and praying for a fellow survivor to conquer decannulation and go home – trachy free.
The idea of this terrifies Daddy. He says he doesn’t think he is ready to deal with it pretty much every time it is mentioned in our house. Daddy says that he doesn’t think I am emotionally and developmentally old enough to deal with it because the trachy is all I have ever known and I won’t understand what is happening, I won’t understand even if Mummy and Daddy try to make it out to be such an exciting and big deal and I certainly won’t be able to acknowledge that i need to try hard, otherwise I will fail the trial…..or so that is what they think?!
This was the conversation this morning in the playroom when mummy mentioned that another parent on the forum was asking for advice on decannulation and what to expect. As always, the conversation ended with tears on both Mummy & Daddys part.
We are constantly getting questions regarding my trachy and when i will ‘get it out’ and Mummy & Daddy are really understanding about it. How would anyone know unless they had experienced it. However, no matter how much Mummy explains, she and Daddy are certain that people are under the illusion that I will ‘just get it out’ as in, I will literally go to hospital, they will take it out, and sew up my hole and then send me home. And that we will all live a normal happy life, happily ever after. IF ONLY!!
So here are THE FACTS…
I have my tracheostomy due to severe Grade 3 Subglottic Stenosis (windpipe collapse at the top of my airway below my vocal box) and laryngomalacia / tracheomalacia / bronchomalacia, which basically means the rest of my airway is floppy, like the end of a balloon and so sometimes it is open, sometimes closed. And I have no control over it.
The floppy airway cannot be fixed, however this condition pretty much always corrects itself in time, however every body is different and if it self-corrects, it will do so – in its own time. Usually before adulthood.
The collapse will either correct itself over time, or will need a reconstruction (which is more likely given that it was a 75 – 99% collapse). However, the reconstruction cannot be done until the floppy airway has sorted itself out. Now, if the collapse sorts itself out, there is a risk of it collapsing again because that part of my airway will always be weak, a little bit like a hosepipe that has a kink in it, no matter how many times you smooth out the kink, it is highly likely it will bend again in that place, a little bit like my windpipe. Equally, If I had the reconstruction, which is a major operation, there is a high chance that 1) it won’t work and 2) if it does work, it will again collapse because it is 1) always weak in that area 2) the stent put in may become inefficient as I grow and my windpipe changes in accordance.
The reconstruction is a major operation which is usually done in multiple parts, and involves me been asleep, not just for the operation, but sedated in intensive care whilst my windpipe heals between operations, so that I am kept safe during this time. It involves taking parts of my rib and using them to rebuild my windpipe.
My Consultant, who Mummy & Daddy hold in such high regard, refused to give Mummy any false hope with regards to me getting the trachy out, especially in the early days, because my collapse was so severe. However, Mummy kept pressing him every time and upon a successful review about 6 months in, he said that he aimed to get it out by the time I was 7, but of course there were no guarantees and lots of probability.
Mummy kept that in mind and we all kept going. Mummy & Daddy always of the mantra that if I had it forever, it wouldn’t be the end of the world, and who knows where medical science would take us during my lifetime, whats the chances I would still have it in 20 years? Or that it would even hinder me in any way? there are worse things.
However, as time went on, I got less and less infections, gained more and more weight, showing that my body wasn’t working too hard and burning calories, I became more and more active which meant I had energy to do so, and eventually I learned how to make noise because my windpipe had grown strong enough to allow an air leak. Mummy will always remember that appointment, where I took a big deep breath (through my mouth), jumped up and down on daddys knee (look at me, look at me Dr R) and squeeled to show off my voice resulting in our Dr stopping what he was saying, mid flow, having a minutes thought, (silent room, anticipation sky high) and then coming out with ‘ill try and get it out next year’…..Mummy & Daddy cried. Again. Only a parent going through a journey such as ours, could be so emotionally charged about such a decision.
And so here we are, in THAT year. 2018. The year that Dr R is going to TRY and get my trachy out. Otherwise known as decannulation. And so what next?
The respiratory team who also look after me at Sheffield Children’s Hospital, work in partnership with ENT (Dr R) and they said that they wanted me to do 9 months out of hospital with no infection. Again at my last appointment, where I was running round Dr K’s office, making noise, Dr K said, he clearly doesn’t need that trachy, what is Dr R doing about it’ and that gave us hope, that as both the extremely capable and experienced consultants both felt it was a possibility, this year might be our year. We have also done 10 months without hospital admission and only 2 months left of RSV season….
We are waiting for an appointment where Dr K and Dr R will take me to theatre and put me to sleep and have a look at my windpipe. This will be the first time they have looked since I got my trachy in 2016. Here they will decide if 1) i’m not ready yet, keep the trachy and have another look next year. 2) my floppy airway has sorted itself out and I can have a reconstruction. or 3) my floppy airway has sorted itself out and my airway has grown strong and so we can try a decannulation. or 4) there is always room for something random to be thrown in. haha!
So after a decision has been made, If we are to try reconstruction or trial decannulation, I will wait on an appointment.
I have explained reconstruction, with the series of operations. Once the operation has been completed. Then a trial decannulation is next. If we don’t need the reconstruction, then we will go straight to the trial decannulation.
Our understanding of this is pretty limited, as obviously, we haven’t done this before. But, when I go to hospital, they take my trachy out and put a smaller one in. They will also put a cap on the end of it so that I can’t breathe through the trachy tube, only either side of it, now that my windpipe is big enough. They will monitor my oxygen saturations and see how well I cope without the trachy through the day and the night. If I manage and I don’t get tired, then they will take the trachy out and cover my hole up with a big plaster and they will see how well i cope breathing through my mouth / nose. If I can do so. They will again monitor my breathing and oxygen levels through the day and night and if my numbers are acceptable, they will send me home. Obviously, everything else needs to be ok and safe, the hole not infected, a safe swallow etc as everything will feel different, even breathing, and so I will have to master all of this.
Obviously as time goes on and my hole begins to close on its own (they don’t sew it up within the first 10-12 months) I will be reliant on breathing through my nose / mouth and of course, I need to continue doing this well and not showing signs of respiratory distress.
Only 40% of trial decans are successful. Reconstructions aren’t highly successful either in patients as young as me. It could all work perfectly first time, and then I get a cold in winter, or croup or something, and my windpipe collapses again and I need my trachy again.
It is highly highly highly unlikely that I will pass the decannulation first time and then stay trachy free for the rest of my life.
And so this life, this pressure to avoid winter bugs, the worry, anxiety, is pretty much always going to be there. Even if all goes well, it will always be in the background.
Mummy chats to other Mummys often through the support group, whose children have failed the trial decan, or passed, got rid of their trachy and then ended up with it back 7 months later, some who may have the trachy for the rest of their lives. As I said before, every one is different but we find quite often that people think one day they will just take it out, and that will be it.
We can but hope.
And so, we are in limbo awaiting the appointment. Dr R said that it would be done early spring after RSV season, to allow the best chance before winter season again in September.
However, regardless of this, next year will be our first winter where we won’t be hiding from germs, and so we are without doubt going to get every bug going, and so it is a huge huge pressure and worry, that I will make it through my first winter without the trachy, if I manage to lose it this summer that is.
Every time Mummy is alone, which is usually once a week for 50 minutes when she nips out to do the food shop, she usually has a cry. Because this is what she thinks about as soon as her mind is free enough to think.
Ironically April – September is the important time this year, for the reasons above, but it is also ours and Mummys Birthday in April, Mummys 30th, and so we daren’t plan things, just in case they clash with our appointment, and so mummy & daddy were just discussing this before bed time tonight. Mummy was also feeling a little pants contemplating the week ahead, with very little plans, other than playing in the play room, germ free, and we still haven’t seen Nannie properly, for over two weeks because she has been poorly. We are missing her very much. Everyone was a little emotional, including Austin who was super tired.
At bath time, Austin was taking big deep breaths in and out, and I copied. Mummy and Daddy took it in turns to feel the air coming out of my mouth, rather than my trachy. That is a really good sign because my mouth doesn’t work, or shouldn’t rather, the air should come out of my tube and no noise should come out at all, because air doesn’t, or shouldn’t go through my voice box, it bypasses it with the tube, and so we all had a little shiny eyed moment, feeling the air coming out of my mouth as I copied my Big Bro and took big deep breaths.
I have every chance.
Fast forward ten minutes and we are all sat in the dark, Mummy with me in her arms, Daddy with Austin, us boys fast asleep, Mummy & Daddy sobbing.
‘Look at them now’ Mummy said. ‘I can’t believe what we have been through’. Daddy said we will get through it all, and that these boys (us) are superstars just waiting for our time. Daddy said that these boys were sent to us, because nobody else would have been selfless enough, like Mummy, to give up everything. Mummy said that all she wants for her birthday is just one day, where people truly understand, show empathy. Get it! Daddy said its impossible because how can anyone get it, until they have lived it. Daddy said that even Nannie & Grandad don’t get it, and they see the most.
Mummy really needs to get over this. So what if people don’t understand. So what if Mummy is missing out on time with her friends, Mummy & Daddy don’t get date nights, or we don’t have family holidays or swimming lessons. So what if Mummy gave up her career, her friends, her entire self, for us…..
Mummy, between each sob and wiping her tears, told Daddy that she has given up everything, that in here (tapping her chest) she feels empty, her soul. Mummy literally has nothing for her. Mummy talks about this line, that she is so close to the line, where she is terrified of crossing the line and losing control, not being able to get herself back.
Daddy said that wouldn’t happen, not only because we all know she will find it from somewhere but because me and Austin will keep her on the line, because we need her. And we will look back on these hard times just like we do all the others, and say that we made it.