"tonight he might die"

On Thursday the 9th April after the most restless night with little-to-no sleep, only two questions where playing through my mind. 

1) Will I wake up in the morning (if I slept at all) to the news my son had passed away during surgery?

2) It's been ages why haven't we heard anything?

Going back to question one… I didn't sleep, and this question is the reason why. I have been through many troubling nights in the past, but this one was definitely the worst of all. The thought of waking up to being told “we are sorry Mr Ryan, but your son has passed” only kept me awake. How can you switch off when that’s all you can think about? 

I was laying there in an unfamiliar place thinking about how we’d been immersed into a world panic in which we were told we had a slim-to-none chance of Oliver making it the through night. We’d been surrounded by health care professionals, all of whom were visibly strained with empathy in their eyes. Whenever they looked or talked to you, it was unnerving. At the same time, it's nice to have them to talk to.

It got to 9am and it had been roughly 5 hours of waiting and by this time and I’d had no sleep. My brain was in overdrive and living off the energy drinks and coffee provided. I spoke to Fran and thinking the worst asked "its 9am why haven't we heard anything?". I knew she didn't know, but you do that don't you? You ask questions hoping for some sort of closure, all the while knowing it's not going to come from that person.

As it got closer to 9:10, the nurse came to speak to us. Confined into a small family room absolutely dreading the news, Fran and I sat holding hands waiting for the update that was going to define our future.

As the nurse, doctor, and surgeon all piled in the room, the feeling that the worst has happened only strengthened. Upset and sleep deprived, I sucked in my gut and put my chin up. That's when I saw a smile on the face of the surgeon, "your son made the surgery".

Ecstatic beyond belief, call it what you want to call it, but a miracle happened that day. I remember just looking at Frances eyes filled with tears of joy alongside so much respect and admiration for all who assisted with our son’s care.

The surgeon went on to explain that Oliver had needed 5cm of bowel removed. He was also fitted with a stoma that could potentially be reversed depending on his health going forward.

All the secretions that where leaking into his stomach and lungs appeared to have stopped.

Lost for words, I called everyone I knew; "Oliver has smashed the surgery". Not only did our son defy the odds of a breached premature birth, he had also defied the odds of making the travel to Brighton and survived the extremely risky but life-saving surgery. He’d defied the odds despite us being told, “tonight he might die”.

Our son the fighter; defying odds and showing the world he belongs here.

Shortly after, we were able to see him, but we had to take it in turns. I feel this picture sums up a lot that I just can't find words for. 

To see any child looking like this is unbearable. But when it's your own child, I don't even think there are words for that feeling.

The medical team had also discussed with us that despite the surgery going well, there was a chance of post-surgery complications arising and the need for intense post-surgery care.

After spending most of the day with him on the 9th, we had to make our way home. Leaving him at the hospital looking as he does in the picture was just beyond comprehension. I didn't want to leave but smelling like a teenager who hasn't discovered deodorant yet, I knew I had to. 

Before leaving Brighton hospital we were spoken to by a senior nurse. Unexpectedly and something that I certainly hadn't thought about prior, our accommodation was brought up.

Due to covid-19, family rooms were out of action. And accommodation such as hotels etc were not in operation. Visitation was also discussed (only one parent per day with only a 2hr visiting window).

It very quickly dawned on us that regular daily visits to Brighton were going to become our normality.

We went home that day feeling so positive about Oliver but disheartened about the fact we were going to have to do a 4hr round trip on a daily basis. I would also be doing this while still working 35 hours a week as a mental health support worker. 

I knew I wasn't going to make it every day; he wasn't just 10 minutes around the corner anymore. With my paternity leave already taken and annual leave dwindling away, as well as missing days with my daughter for hospital visits, trying to work out expense for petrol needed for a 4 hour round trip, I was rather ready for a break down. 😩 

I can only imagine how Frances felt, but I would imagine it wasn't too dissimilar from my own thoughts.

10th / 11th / 12th April ... We made our way back down to Brighton and the news was ok. They had changed his breathing tube, he’d aslo had a slight opening on his wound due to swelling from surgery. It was of minimal concern, and all the substance from his lungs had dissipated.

His stoma was still inactive at this point.

But all seemed to be going well ... I believe Oliver also had another blood transfusion on one of those days due to haemoglobin levels etc, but nothing of concern.

Also, the nurses had made an Easter card that had prints of his feet on. 

Next… ventilator to bubble cpap/ how long can he fight for (major turn)

But first a digression pt5 (Go fund me)