Shit times 

Technically it’s the early hours of Saturday as I write this. And the wildest part of my Friday night was getting a takeaway Nando’s (and I didn’t even get the peri-peri chips) and then getting in the jacuzzi with my mum.

Since I have had Barney most of the time I don’t know what day of the week it is – I can sometimes work it out by if eastenders is on. But god help me if it’s a bank holiday as I have no clue.

It’s like time has gone really fast since Barney was born but also really slow. I can’t remember what I did in my life before him, who or how I was and what I did with all my time. But now it’s like wow he’s suddenly 16 weeks old – it’s flown by. And I really get that cheesy phrase “treasure every moment”, cos they are only this small once and you won’t get this time again: when they can’t crawl – so you don’t have to worry about them sneaking off when your not looking, and you can still enforce cuddles. And they can’t speak so they can’t scream no at you and tell you they are too old to wear matching mother and son dungarees. 

On Monday Barnaby has his operation. It’s called a pull through operation. They will remove the part of his bowel which is missing ganglion cells (ganglion cells make his muscles relax and the bowel open so stool can pass through). It’s not a small operation – from speaking to other parents with children with the condition it seems to average about six hours.

You can do a lot in six hours: Watch two lord of the rings films or six episodes of love island. Have a spa day. Shop till you drop. Make a lasagne from scratch. Paint a room. Knit a hat. Have 4 REM cycles. 

The surgeon has warned us of all the risks of the operation. Of course I want to know all these but I’m also now completely petrified. It’s the most bizarre thing as I have been wanting him to have this operation since he was born and been eagerly waiting for a date. It’s the next step in his recovery. Wishing time to go quicker so he could have the operation but now I wish I hadn’t.

People ask me if it will just be the one op and it will be fixed. I wish I could say yes. But I can’t – we just don’t know. At this stage we still don’t know how much of his bowel is effected, or what condition it’s in. We don’t know if he will need a stoma. And we don’t know what his recovery will be like in the short or long term. Again it’s all about time. 

I can hypothesis about it. And i do:

“On Monday we found stool at ….cm so that means …..”

“The gas is always trapped at ….cm so that means this….”

“He pood by himself for three days in a row so surely that means this….”

But I don’t want to get my hopes up. I have read medical research papers and they don’t go into that much detail pre-op about the condition. I have scoured the internet for stories. But i think I have confirmation bias so I’m just looking for things to back up my theory.

The not knowing and the absolute lack of control and complete helplessness of the current situation is breaking me. That’s why at 1.20am I am writing this. Instead of catching up on some serious Zzzzzz’s. 

And on Monday I will be wishing time away again. Wishing for the operation to be over. Wishing to be reunited with my child. Wishing to know the results. 

And then his recovery will be time focussed too. How long will they keep him nil by mouth? How long till he does his first poo? How long till he’s well enough and we can take him home?

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