Friday, 13 December 2013

Dusting off the blog

Cough, cough. Knock knock, hello? Anybody out there? 

It's been a busy few months. 

I wanted pictures, but the perfect photo isn't coming, the imperfect ones are a little indecent, and so you'll have to make do with a word picture instead. 

Five or six years ago now, a certain small girl finally swapped the NG tube she had had since birth for a PEG and then a button. From purées via feeding therapy to solids, and from overnight feeds to drinking more than enough to keep her kidneys working nicely. Via, inevitably, since tLP isn't always terribly princessly, a rather disgusting interlude when oral fluids were banned, a prohibition she circumvented by sipping stomach juices directly from the PEG. Things they don't tell you about when you sign up for these children. 

 Anyway, from purées and tube feeds, via disgusting episodes, to eating and drinking everything necessary, taking medications orally, surviving even after major surgery without really using the tube. Marvellous. 

And so, time to remove the tube? Well, no, tLP decided she wanted to keep her button, "because it's me." Fair enough. But a sore, manly, discharging, revolting stoma held open by an unused gastrostomy button and bleeding all over ever white school top isn't really the ideal thing to need as a part of your self identity. 

Careful propaganda every time we cleaned it. Gentle suggestions from carers and nurses and less sympathetic "it wouldn't BE sore if you didn't have it any more" type comments from yours truly, and suddenly, she decided she was ready for it to come out. 

She told me, I phoned our long suffering community nurse, and she found an almost instant spot in her diary. And before tLP could change her mind, the button was out, the fairly grim hole was dressed, and tLP was officially no longer a gastrostomy user. 

One week later, and the hole is just a slightly purple dimple. Much to our surprise, the mammoth over granulation has not formed a giant wart like mountain  over her stomach. A gentle purple dimple - more of an "innie" than her tummy button - and an even older tiny scar across one nostril are now the only reminders of her 8.5 years as a tube feeder. 

Rather unfortunately, the dimple is a similar size to the scar left in the middle of her forehead from her first ventilator mask. So she now appears to have been shot in the stomach as well as the head. But I guess she can always use that when she gets tired of explaining why she needs the wheelchair. 



R said...

Well done, LP. It must feel funny not to have it, but it must also feel AWESOME to not have sore manky bleedingness. For you it's a big part of growing up - something you needed as a baby but that you don't need now - a lot like nappies/pads, some people keep needing them even when they ARE grownups, but you don't.

Anonymous said...

YEA --way to go tLP

Danni said...

Well done Little Princess!

I snorted a bit at that last statement. I think I'll file it under best responses to the wheelchair question as it's better than many of mine :-P

Tina said...


Catherine said...

Those last two sentences made me guffaw and nearly wake the Knight and Toddler! Well done tLP!


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