One of the worries about being home is what happens when Kai pulls out the tube. We won’t have nurses in our living room, so we can’t just pad down the hall and have someone put another back in.
They asked if I’d want to learn how to put it in, and the truth is: no. No I don’t. When I have to hold Kai’s head still, and he’s screaming and there are a kajillion hands over his face putting tubes down his face I want to cry with him. I hate it, I positively absolutely loathe that this is a necessity.
Put in perspective, it’s not the worst tube. It’s not a cannula into a vein, or a vent to help him breathe. It’s a small little one, and by far not the worst tube.
That doesn’t mean I don’t hate it, because I do. I hate that it messes up his face, and that we need to mitten his hands to keep it in. I hate that when he screams you can see it running down the back of his throat. I hate that Kai clearly doesn’t like it, and wants it gone.
So when we’re putting a new tube in, I feel all the things. And I’m crooning platitudes and trying to comfort my child as I forcibly restrain his head and just… it’s rubbish.
Once we’re home we will have community nurses available to us during daylight hours, who can come out and put a tube down if we need.
At night? At night Sam stepped up and said he’d learn. To be fair though, he stuck a tube down his own nose at the prompting of a nurse the other day, so yeah.
He’s spent some time hanging out with Adam. Adam is the creepy child mannequin where you can learn all the things (NG, trachie, g-tube button among a dozen other things. Poor creepy Adam has it rough).
Still, Sam has been signed off by two nurses, and has been given the thumbs up to put an NG tube in for Kai if need be.
Honestly, I was so blissfully unaware of what special needs parents learn to do in The Before. I guess this is just one thing of many that we’ll learn to take care of.
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