Posted by: Debra | August 15, 2014

A Squash and a Squeeze

Life is pretty different since having the newly reconnected, and subsequently improved Olivia back from hospital.  We ceremoniously packed up her ileostomy stoma supplies, shoved them in a massive box and cancelled the next delivery.

Whilst discussing her reversal with a friend she reminded me of the Julia Donaldson (of Gruffalo fame) story “A Squash and a Squeeze” Based on the Aesop’s fable, it’s a moral-packed tale of a malcontented woman who complains of her a house being too small.  A wise man advises her to move all her animals in with her, then after much fretting from her, advised her to move them back out.  Net result the previously malcontent woman was jumping for joy at how spacious her home now was.

This is exactly how it feels to have Olivia back.  The misery of nappy changing had turned into a truly difficult operation.  The weighing the fluid, recording the data, interpreting the data, emptying her ileostomy bag, changing her ileostomy bag, managing her ileostomy supplies, clearing up when it went wrong, changing her (and our) lifestyle, re writing her care plans and more, had all been weighing very heavily indeed on an already full work load.

..and then it was gone.

Now nappy changing is a breeze. I mean that’s all you do, you change her nappy and …well you change her nappy.  Yes, we still need to weigh them but even that’s easier than disposing of liquid faeces.  Actually this kind of care of a doubly incontinent non mobile child is quite difficult, it’s logistically and physically challenging and infinitely harder than changing a baby.  Compared to ileosomy care though, it’s nothing

It has reignited a discussion that we had daily whilst Olivia had an ileostomy about dignity.  How long do you nappy change  a child like Olivia out of the house? On floors? In Parks? At what point do you make a call to protect their dignity.  At what point do you say if there isn’t accessible and/or appropriate privacy then you don’t.  If  it’s close friends or family homes does that mean you no longer go?  It’s an ongoing dialogue but I hope we’ll make the right choice for her, at the right time.

Since surgery Olivia really seems to be enjoying her new simplicity.  Popping her out of the bath and into her jammies never felt so good.  Sadly though it’s not been plain sailing.  She’s still requiring suction despite her fluid balance being restored, we’re not sure her new prolonged seizures have stopped and she was readmitted to hospital over last weekend with another distended abdomen.  After a day or so they managed to deflate her (as unpleasant as it sounds) so it might just have been a blip.  More likely it’s an indicator that her bowel just doesn’t work and life without an ileostomy may not be possible for her.  We’ll see.  We’re watching her like a hawk, but for now we’re looking on the bright side that something actually got easier.

Now you don’t get to say that everyday do you?



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