A rare life – day 16

It is nearly a month since Miss Z got her G-J tube. The gastrostomy-jejunostomy or G-J tube gives us access to both her stomach and her jejunum (middle part of the small intestine). The benefit of this is that Miss Z is now fed into her small intestine rather than her stomach, making it impossible for her to reflux or vomit her formula, which in turn protects her from aspiration. She still gets her meds into her stomach, which gives them the best chance for absorption.

I felt incredibly sad when she had the operation to place the G-J tube. Miss Z’s condition is life limiting and I felt like we were taking another step towards exhausting all our medical options. I also worried that the G-J tube, which requires continuous feeding, would affect Miss Z’s quality of life – and ours. She is a wiggly, active little girl, which isn’t always compatible with a carefully placed tube in her jejunum – something she demonstrated when she managed to pull it out! And the thought of yet another responsibility, another thing we have to deal with in order to set food outside the door was exhausting. Still, there was very little choice considering the severity of her reflux and her chronic chest infections.

A month on, however, and I’m wishing we had done it sooner!

In short, Miss Z is a new girl. She no longer rattles every time she breathes. Her chest sounds the best it has in a long, long time.

She no longer spends her days coughing, gagging and vomiting her formula. Previously, she would vomit up to 10 times a day. You couldn’t take her from one room to the next without a sick bag and her suction machine. Taking her out anywhere was a game of Russian roulette involving vomit and the risk of having to make a hasty exit while bystanders stared at you in horror.

In contrast, the suction machine has sat in her bedroom, unused, for the past two days. And last night I realised that we haven’t restocked the sick bags in her bedroom for a week.

And best of all, it is obvious that she feels better. She is happier and healthier.

So, yes, the continuous feed is a bit of a hassle. And yes, she has already managed to pull it out once… and probably will again at some point. But oh, it is so worth it!


My girl, the tubie-times-two!



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