I staggered through the door this morning around 10am after a long, sweaty business trip to Malaysia that ended with a red-eye flight back to Brisbane after a long day of monotonous PowerPoint presentations (should any of my bosses inadvertently stumble upon this blog, I am, of course, not referring to your presentation, which was, naturally, brilliant).
It wasn’t really the homecoming I’d hoped for. Vegemite was at school (although gave me an enthusiastic welcome later that day) and poor Lil Z was unconscious in her high chair after suffering a seizure and being given Midazolam to stop it.
I’d been away for 3 days. It wasn’t particularly fun – I’d spent too much time on airplanes, waiting at airports, or sitting in overly air-conditioned meeting rooms listening to endless presentations and then being encouraged to “workshop” new ideas. The resort where we stayed in Langkawi looked beautiful but unfortunately I never had a chance to find out as the few precious moments I wasn’t being subjected to presentations or workshops, I was having “enforced fun” activities with my colleagues.
Still, it was nice to have 3 days of not worrying about what I should be doing for Lil Z. Lately, its been like a dark cloud over my head. My main concern at the moment is Lil Z’s PEG, which is looking increasingly dodgy. Gunk (for lack of a better word) seems to be building up in the tube. We flush the tube regularly with water before and after every feed and medication, and now also do flushes with warm water to try to dislodge the gunk, but it is still building up. On top of that, the tube feels strangely distorted – bulging in some places and dented in others. I forgot to open one of the clamps the other day and tried giving her meds and the tube actually bulged like a cartoon hose with a fat person standing on it – not a good sign. And as far as I understand, it’s not replaceable, except surgically.
Lil Z was supposed to have her PEG replaced with a mic-key button within 3 months of originally getting the PEG. As successful as the PEG has been in terms of getting her nutrition and medication, it is still a bit inconvenient. The tube dangles out from underneath her t-shirt. It catches on things, gets in the way and makes physiotherapy and tummy time that much more difficult. And then there are the toe curling moments when I’m lifting her out of the car and it catches on the car seat and I end up giving it a big tug before I realise what is happening. PEGs are often inconvenient for kids, which is why it is often switched for a button (which sits flush with the skin, and is therefore less obvious and less likely to catch on things).
Unfortunately for Lil Z, the fact that she is considered medically fragile means that she can’t have the PEG switched for a button in the gastro department, like they usually do. Instead they need to do it in an operating theatre with a specialist paediatric anesthesiologist and better emergency care should anything go wrong. And since so many of the kids can have their procedures done in the department, gastro apparently gets very little theatre time.
And so we’ve been waiting. I’ve spoken with the (extremely overworked) Gastro Nurse about my concerns with Lil Z’s tube. And I got the general paeds fellow (who Lil Z has wrapped around her finger) to speak to the Gastro department on our behalf. But I was resigned to a long and frustrating wait.
So, returning home today, I was thrilled to discover I’d received a letter from Gastroenterology. Although we don’t have a theatre date set yet, Lil Z has been given a high priority for the surgery and “most patients within this category receive their treatment within 30 days”. Its a big – and welcome – surprise. Bring on the button!