Hopefully, the days of that NG tube on Kai’s face are finally, finally numbered. We had our very first consultation with a lady from the paediatric gastro surgery team. She was lovely. I liked her. The initial appointment was to confirm that Kai was indeed a candidate for a gastrostomy. I didn’t even say anything, really. Moments after we walked in, Kai tugged on his ng tube and I lunged across the buggy to detangle his chubby little fingers.
“That,” she said, “is an excellent reason to get a gastrostomy.”
I wanted to hug her. I was prepared for a battle. In my head I’d listed all the reasons why I thought Kai should have a gastrostomy, I had the support from our Speech and Language therapist, our palliative care team and our primary care neurologist. But it was all for naught: she saw that Kai was intentionally pulling on the tube, the scratches over his face where he’d missed, known from his notes he had seizures and sleepy periods and that was enough.
Not having to fight for something, not having to convince and follow up and remind – what a relief. It felt like the stars had aligned.
We talked about the differences between a peg and button, we talked about what the surgery involves and the risks and the benefits. It was a quick one because I was mostly all up to speed and didn’t have any questions. Apart from one.
Turns out, if Kai is over 10kg, and fairly close to his first birthday, we can skip the PEG and go to a button. Woohoo! Kai is currently at 9.78kg and is one month out. Ish. Considering the waiting list is currently 6 weeks long, I’m confident we go straight to a button.
PEG – stands for Percutaneous, endoscopic gastrostomy tube. Its a thin tube that a small bumper at the end. It’s sent down the throat to the stomach, where it is threaded through a small hole in the abdomen. It has a bit of a tube that sticks out, and unfortunately, to be removed requires another surgical operation.
The Button – Instead of the tube that’s held in place with a bumper, there is a little silicone button that’s held in place by an inflatable balloon. It means that it can be changed as required, and doesn’t need to have a tube attached.
I left happy. They’re going to schedule a fluoroscopy next to make sure Kai’s stomach and small bowel are all in the right places and work as expected.
Fingers crossed. As helpful as the NG has been, we’re so so ready for a gastrostomy!