Off Trach

Tuesday night, mid-way through our bath and bed-time routine, with the buzzy bee Big T bought us flashing its stars on our cieling and the bu-bum of its 45 minute long heartbeat in the background, we were half asleep, finishing our milk and Daddy asked Mummy if  we had received anything from the Children’s Hospital, we had, a few days before, the SHINE magazine, but Mummy had read it and recycled it. Daddy’s work- friend Rachel had mentioned to Daddy because there was an article in there about a man who suffered PTSD after the premature birth of their twins at 32 weeks. Its no news to us, we understand. Both Mummy and Daddy have had recurrent nightmares, flashbacks and severe anxiety as a result of the traumatic experiences since our birth but neither have them have allowed this to be ‘labelled’ as PTSD or anything like, nor have they faced it, it has been shelved, because like Daddy said ‘its not about us’…but then Mummy and Daddy burst into an emotional conversation about how difficult this time of year is, not least because of the difficult times we had this time last year, but because this time of year is always difficult because of the weather and winter bugs and the effect that it has on us.

Mummy had been thinking about blogging for this day – the one year anniversary of my tracheostomy – and that this would be the start of her second book, if ever she gets around to writing it, and then she found herself replying to a post on the Tracheostomy UK Support Group Forum where another Mummy had posted a picture of the ‘living with a tracheostomy’ booklet and said that she had read it a hundred times whilst waiting for her little one to have his trachy operation and that she has never felt as stressed in all of her life. Mummy understood.Not that long ago, it was Mummy sat in that waiting room with Daddy by her side, waiting for me to return after my operation, everyone fearful for the future. Mummy replied to the lady, reassuring her that whilst today is a very dark day, she and  her little one will find their happy place again, because we did. Mummy went on to explain that I am a twin and my twin (Austin) doesn’t have a trachy and we live completely equal lives, the trachy hasn’t stopped me doing anything that Austin can. Mummy concluded with ‘we can’t change it, so we need to grasp it and not let the early years pass us by’…..other mummys agreed and said that she was completely right. This made Mummy emotional, she relived the past year in a second in her mind….we haven’t let the trachy rule our lives, we have got on with it, and we have made sure that the very special piece of plastic that saved my life and keeps me here every day, is just that, a piece of plastic, and Mummy’s attitude towards living with it, has enabled us to do just that – LIVE!

And over the following days Mummy read back all 43 blogs that she has written since the day that I had my operation. There were highs, there were lows.

She remembered standing in the corner of the hospital room, watching the world going by out of the window and sobbing her heart out, realising for the first time that she can’t control this and things were going from bad to worse, like a runnaway train. The babies Mummy had wanted so desperately for so long and had almost lost, were slipping through her fingers once again, or rather I was.

Then she read about that time the surgeon cancelled my operation because she was so impressed with my windpipe after the smaller operation to open my airway with a balloon. She remembered feeling so proud of me, walking out of the hospital, shiny eyed, telling me how strong I was and how relieved she felt. Only for my windpipe to collapse days later.

How Daddy had caught a cold and the anxiety this brings to our home, where everything is boil-washed, anti-bac’d and how Daddy lived in isolation and Mummy battled through on her own. How the nurse visited, like she did every week and after checking me over reassured Mummy that if we had caught the cold, we were managing just fine, yet hours later my gasping for breath, Mummy having to leave Austin and Beau with Auntie Mandy and drive me to the hospital, hearing me gasping (the stridor) all the way there and then upon leaving the motorway, Mummy frantically screaming at me and reaching behind her, shaking my car seat because I had stopped breathing and closed my eyes. Those things will never leave her.

Seeing the crash team surrounding me, the Doctors moving old people out of resus beds to make room for me, because I was THAT poorly. Stabilising me to transfer me to Sheffield AGAIN, and then spending nights on critical care, operation, down to the ward, back to critical care, another operation…..over and over….

the ten days in the thick of this were the hardest 10 days of Mummy and Daddys entire life. This is why this time of year is difficult!

Here is a snip from our blog at the time…

Mummy always manages to put a positive light on a situation, and at that time, this was exactly what she thought, but on reflection, she and Daddy admit that they didn’t give themselves credit for how big a deal this was and how difficult it was too. Mummy just chucked herself in there but Daddy found it very hard. We have never really shared a lot of details about my return to critical care following the operation and I am not sure we ever will.

At that moment in time, having dealt with an awful lot already and feeling like as a family, we had conquered the battle (14 week prem, 99 days in NICU and finally making it home) Mummy felt like we were slipping through her fingers again, like she was loosing us all over again. At that time, Austin was also poorly, on one ocassion Mummy had left me at the hospital to drive home and take Austin to the Doctors, within the same week, the nurse had referred Austin to A&E from home and so Daddy was upstairs in critical care with me, whilst Mummy waited downstairs with Austin in A&E.

This is just Winter, with two immuno-compromised / neutropenic premature babies, with chronic lung disease and now a tracheostomy.

But we continued, we had two weeks apart, Daddy quite aptly wrote that at a time when we need eachother the most, our family was torn apart.  We both had a hip check appointment in x-ray and so Austin came in from home and I went down from the ward, Mummy knew that Daddy was struggling and so we all snook back up to our room for some precious family time.

Here was our blog at the time…

On reflection of our blogging a year on, we still have the same struggles. People think that because we look so well on the outside that we are better and no longer have the same challenges….

Winter is a killer!

Following my trachy op, and the already difficult situation we were all in, I got VERY poorly. Mummy and Daddy begged the Doctors to sedate me, how crazy is that, watching me sleeping on life support was normal to Mummy now and she would rather have that, than have seen me deteriorate in the way that she had to in the following weeks. I refused feeds, it was strange sucking and swallowing again with a plastic tube in my mouth. I vomitted ALL of the time, much more than I had with reflux, which was already an excessive amount, I lost weight, I became hugely oxygen dependant. I was riddled with infection. The pain team came, they gave me morphine…..I was slipping through Mummys fingers, again!

The Doctors put me on continuous feeds, a machine gave me a little bit of food every 3 hours. Mummy was too inpatient for that, she just wanted to give me a bottle and feed me up again, I was disappearing in front of her.

We had received funding for an injection that supported our bodies if we caught the dreaded RSV virus, that is how vulnerable we were. We had this injection every month between september and march.

Mummy and Daddy were used to hospital life now, they had spent only 3 weeks at home in 6 months. They had entertained me alongside the play team and my room was very homely. Mummy made me tin foil caves with lights across my bed.

Mummy had a chart on the wall, she was forcefully trying to get me home, but there was so much paper work. so much training, so many observations and tests to pass. Mummy and Daddy weren’t even allowed to take me home, their own son, until they could prove they were competent. This drove Mummy insane. She had a plan on the wall….except, she got poorly and so had to be isolated and couldn’t visit at all.

Eventually I was allowed home for 4 hours. The nurses had tried to warn mummy that she might need a transition period to getting me home, Mummy just wanted to take me and live happily ever after and never come back.

I remember the drive home, we had to stop every couple of hundred metres (9 mile journey) to suction me because I was choking on my secretions. Deep down Mummy & Daddy knew this was going to be MASSIVE…..on the surface they smiled and they crammed so much in to that 4 hours, we did pumpkin carving, messy play, walk to the ponds with Beau, fed the ducks…living every day as our last.

Having written that just now, Mummy has realised that we have stopped that now. For the first year of our lives, Mummy lived every day as our last, 100 MPH…..

I returned to S1! We had a weekend tucked away watching films, although, pushing the boundaries as always, Mummy managed to persuade the nurses to let us have a walk around the park, so Daddy brought Austin and that is what we did. Something so small meant so much. My brother and I, side by side, being pushed around the park. Mummy and Daddy doing things that normal parents do.

On Monday we were allowed a visit again, Wednesday I made it home for good. We all slept together under the same roof, Mummy and Daddy in the same bed, for the first time in 6 weeks. And then bang, within a week, poorly again.

Suctioning every couple of minutes around the clock.

Setting hourly alarms to wake up and check as I needed 24 hour care.

4 hourly sleep shifts 10 – 2 and 2 – 6.

monitors, monitors, monitors, alarms, lights, wires…

the suction machine waking everyone up everytime I needed a suction during the night, at least every 10 minutes.

Emergency tube changes when the tube got blocked.

A & E

111 calls

secretions tests…

chest infections

A&E (again)

another chest infection, RSV & Bronch….

12 litres of oxygen required,

tube feeds

IV feeds

(serious anxiety because we all know were this is leading….)

VENTILATED AND INTENSIVE CARE UNIT AGAIN!

Whilst this is always the final destination, there is some relief for Mummy because I am safe. I am asleep and on life support. The machines and Doctors are 100% controlling my life. I am not dead.

time and patience!

Meanwhile, Austin at home had 4 Dr & hospital visits himself.

Both of us poorly, Mummy & Daddy weren’t able to cross contaminate and so Daddy stayed at the hospital, Mummy at home, dropping clean clothes and food off outside of the hospital, living two seperate lives in a difficult difficult time.

Rory came home again on the 17th November, World Prematurity Day. Ironic!

Daddy had nightmares, Mummys fears were overpowering. She spent nights sat on our nursery floor, crying, feeling way out of her depth caring for us, not wanting to call an ambulance, because she didn’t want to put anyone out.

Mummy would shake doing our cares.

Every day was a battle.

She conquered. Daddy by her side.

Despite feeling like a circus act. The suction machine her trick. Drawing eyes from across every room.

Less than a week at home and we were blue-lighted right back to the hospital. AGAIN!

The Paramedic in our room whilst admitting me, commented that Austin didn’t look too good either.

The hospital said that we were on the rollercoaster again, and within days we would need oxygen, ventilator…..it was a waiting game.

Daddy decided we were safer at home until that point, and mummy picked us up.

Austin began his chitter chatter and I was silent. Heartbreaking.

Moraxella, e-coli, RSV, Bronch……let’s go round again!

An then I got better by the day….and within the 3 weeks since I came home, I also had blood in my nappy and a serious UTI.

But i got over it. We managed. It won’t ever be that bad again!

Daddy went back to work, Mummy managed all by herself. It is still a huge achievement that Mummy has managed by herself, no carers, when I am 1:1 and Mummy has Austin too. She is really proud of herself for still getting out and about every day, at least once, despite the military operation, the medical equipment, managing the risks. SHe wasn’t going to let the trachy beat us!

I have had at least 4 infections since then, Mummy had to cut short her time at Center Parcs with Auntie Kerry, Daddy had to leave work on occasions. The world keeps turning.

I had a number of blue-epsiodes, my trachy has blocked, i’ve pulled it out, Austin has pulled it out too. Mummy had to pull our cots apart so that Austin can’t pull my tube out.

It crosses Mummys mind at least once a day to check i’m still breathing. Now we are active and boisterous, my trachy has been out far too many times, the anxiety that Mum will not only realise with enough time to save me, but be able to get it back in safely, is huge. Such a big responsibility.

The week of our first birthday, I developed moraxella again. Always reminds Mummy of cheese that one.

The journey we had is still so unbelievable. Seeing us now, how strong we are, how well I look, how much I have caught up, how strong my windpipe is…..it is easy to forget.

Yes, the trachy has hindered our family life, a lot, the appointments, the equipment, the sleepless nights / all-nighters when we are poorly….but we haven’t let it stop us.

Carrying equipment around the house wherever we go is annoying, having to bring the suction machine if you fancy going for a cuddle on the sofa is an hinderence, but we still do it.

Swimming is a huge risk and a logistical nightmare, but we still do it.

Holidays and sleeping out requires an HGV to move all of the equipment and kit and kaboodle…..but we still go.

We also, still have a sofa bed in Mummy and Daddys room so that when the suctioning gets so intensive, they can pull all-nighters, we still have times when 4 hourly sleep shifts for mum and dad are required. Mummy still sets her alarm hourly when needed to check on me through the night, Daddy gets up EVERY night at 2ish and checks i’m still breathing and my airway isn’t blocked. The trachy is STILL a big deal.

We have had an amazing year. Ok, actually, October – March was pretty pants, but we have so made up for it since March. We have experienced so much and we have not let the trachy hold us back.

Yes, we are hiding again because it is RSV season, but we are 6 months without a hospital admission, whereas we couldn’t manage a week before, we have had RSV and infections and fought them off ourselves….

I can breathe through my mouth, take a deep breath when you ask me. I can make noise, in fact sometimes I don’t shut up. I am meeting all of my milestones. I am no different to Austin.

I walk. I run. I climb. I play.

I am happy. I am smiley. I am cheeky.

I am everything that a 1 year old should be, but 1 year ago, those are all of the things that Mummy and Daddy feared I would never be lucky enough to be!

My prognosis for decannulation was an attempt around 7 years of age, always with talk of a reconstruction, I’ve impressed them so much they will try next year. With debate as to whether I will need the reconstruction at all!

1 year on….WINNING!!

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