Back in January, when Lil Z had her PEG put in, we were told that the PEG would be replaced by a mic-key button within 3 months. Three months came and went without a word from Gastro. The PEG was working out fine, so I didn’t follow-up with any urgency. When I finally did manage to speak to the PEG nurse, she told me that 3 months was a target, but children usually waited longer. So, I waited some more.
And then the PEG tube started to look a bit dodgy. I raised this with the PEG nurse, but was told that these tubes last “for years” in adults. It was also implied that if it was looking dodgy, it was probably due to our poor hygiene in keeping it clean by flushing it out with water after every use. This got under my skin as we’ve always been diligent about flushing. Even Vegemite knows how to flush out the tube. But I let it go – after all, since we never even had a follow-up appointment with the Gastro Department, they certainly don’t know anything about us or how hygienic we may be. And I took their word that the tube would be fine.
It wasn’t until after our Paediatrician raised it with Gastro that he thought the tube was looking dodgy that anything was done. Then I received a letter informing me that Lil Z had been given a higher priority on the waiting list and was likely to be seen in 30 days. A few days later I had a call from the department, asking routine pre-op questions about Lil Z. But 30 days came and went with no further communication from them.
It’s not entirely the Gastro Department’s fault. Budget cuts have meant that there is now only one PEG nurse instead of two. And most children are able to have their PEGs converted to buttons in the Gastro clinic, but because of Lil Z’s complex medical needs, she needs it done in the main operating theatre. And Gastro only gets one day per month in the main theatre. So there is a long waiting list.
However, as when we were on the waiting list for the PEG, we’ve now stumbled upon a way to jump the queue. The first time, QB performed an act of negotiating brilliance by convincing Gastro to do her PEG at the same time as Ortho were setting her broken leg.
This time, Lil Z has sprung a leak. Yes, that tube that is supposed to last “for years” now has a hole in it. We’ve patched it with tape, but it is only a temporary fix. After a lacklustre response over the phone yesterday, I set up camp in the Gastro department today and demonstrated to the PEG nurse that it was indeed leaking. This seems to have got things moving and Lil Z has now been classified as an “emergency” case – which entitles her to theatre time outside the allotted Gastro day. Fingers crossed, she’ll have her surgery this Friday.
Bring on the button!