It’s nearly the big day

IMG_1488We’ve been gearing up and preparing ourselves for months now. On Monday 14th May Alfie will undergo a tracheal resection at Great Ormond Street Hospital. It will be performed by 2 surgeons and a big team of doctors and nurses and will take several hours. There have only been 15 of these operations ever performed at GOSH. It’s unusual and we’ve been told it’s the last chance attempt to remove the tracheostomy. If this doesn’t work it’s trachy for life. It’s a highly complex procedure and after being advised that this was the right thing to do, myself and Tom had to take some time to digest it all and really make sure we were doing the right thing.

Here it is explained on the GOSH website –

I belong to a trachy support group on Facebook and luckily was able to find and make contact with one family that had gone through the operation with their little girl. I bombarded the mum with questions which was really helpful. It’s the biggest op he’s had to face – he’s had some major stuff done already including 3 attempts of trachea reconstruction where cartilage was taken from his ribs and used to expand his windpipe. After each attempt we were told it should work and that we would be trachy free by the end of the summer. For 5 years now we have had that carrot dangled in front of us – “trachy will be in for 6 months max” was what we heard when it was first put in place when Alfie was 8 months old. After that – “lets keep it in for a year”, “let’s try a second reconstruction and will be definitely taking out after that”, “ok let’s try a third attempt, we are sure this will be the one” The final phrase we heard from his surgeon in Bristol last year was “There’s nothing more we can do here, we are going to have to pass this onto GOSH to see if they can come up with something”. Just to go back a little, the reason Alfie has it is that due to his extreme prematurity he was dependent on the ventilator for far longer than the doctors would have liked. They tried on numerous occasions to take it out and go onto the next level down – CPAP but his poor little lungs would only cope for a few days before he crashed and was re – intubated often in an emergency situation. His little airway got knocked about so much and irritated by the ventilator that it grew swollen and developed scar tissue so it was so narrow that he was trying to breath through a tiny airway with chronic lung disease. His breathing was extremely loud as he gasped for breaths (a stridor) and his chest cavities were sucked in to the extreme each time he tried to breath in (recession). So in the end the trachy was the only option.

So we now find ourselves 3 days away from the big Op, last chance. Everything riding on it. I’m petrified it’s going to go wrong, I’m having bad dreams most nights and dark unwanted thoughts are taking me by surprise during the day. Ive spent lots of time on the phone to nurses, accommodation staff, social workers, the OT, school etc trying to make sure everything is set up and in place. I’ve booked the time off work, set cover for my students, booked the patient hotel for the night before on the Sunday, bought enough peppa pig DVD’s to fill a suitcase, bought some suitcases!, we’ve got all the grandparents and my sister ready to be with us in London to help with Rohan care etc. We are hopefully going to be given a room to stay in while Alfie is in intensive care and when he goes to high Dependancy we will have to pay for a hotel in central London. Work have been great and supportive but I have to take unpaid leave as I’m only allowed 2 paid days off a year for being with Alfie when he’s ill or in hospital.

My current mantra is ‘it’s all going to be fine’ I’m not religious but I’m feeling spiritual about this one. I know it’s going to be ok and that we are doing the right thing – we are giving our boy a chance at leading a normal life, one where he can splash in the sea without worrying about getting water near his tracheostomy, one where he can go and stay at his granny’s house or play with a friend without having to have his parents or his carer by his side, one where he may even be able to make some noise and possibly string some words together one day, one where we don’t all live in constant fear that his airway might block off or his suction machine stops working or his tube falls out. It’s been a tough 5 years but maybe 2018 will start to take a new direction. Alfie is beautiful, charming, cheeky, playful and does things in his own way and his own time. Despite all he continues to go through he is a ray of sunshine. He won’t understand whats happening to him next week, his comprehension doesn’t allow for that as he simply lives in the moment, in the present. I wish he didn’t have to go through it. All we can do is hold him and tell him its all going to be ok.


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