Friday, March 23, 2012

A tale of tubes and tanties

There are two basic feeding tubes that go through the nose.

One is an NG tube which passes through the nose into the stomach.  This is the most common and is used often to help people who for some reason cannot or will not eat enough food to sustain them i.e. premature babies, people who are having trouble swallowing for whatever reason.  Usually it is inserted through the nose into the stomach then the carer draws up fluids using a syringe and checks with litmus paper to see that what was drawn up is acidic, making sure that the tube is sitting correctly in the stomach rather than the lungs then you're good to go.  It is not that hard to do and a "lay person" can be trained to do this at home.

The other tube is an NJ tube.  This tube passes through the nose, into the stomach but keeps going through the pyloric sphincter (the valve between the stomach and the intestine) into the small intestine.  It then has to go past the first part of the small intestine (called the duodenum) and sits in the next part of the small intestine called the jejunum - hence the J in NJ.  This is usually inserted with access to an x-ray so it can be determined that it is sitting in the exact right place.  Do not try this at home kids.

Kaylee has the second of these two tubes.

This is not a fact that I relish.

I did not just knock on every door to make sure this was our only healthy option for Kaylee after this admission, I BANGED on every door.  In fact, I stalked a gastroenterologist and threw a huge tantrum in emergency with tears and snot and everything until he came down and discussed Kaylee's treatment plan with me in detail.

Because that's what us parents do.

We advocate for our kids.

But Kaylee needs this NJ tube.  I am convinced beyond a shadow of a doubt and believe me I took some convincing.  I was a very hard sell.  They had to work hard to convince me that the only healthy option was to have my baby hooked up to the feed pump pretty much 24 hours a day.  They had to work hard to convince me that the only healthy option was subject Kaylee to having a tube shoved a LONG way into her digestive tract while exposing her to x-ray.  There is something inherently disconcerting about putting yourself in protective clothing so you can stand and hold your child's hand while they expose her to the rays you just clothed yourself in lead to avoid.  They had to work hard to convince me that her food needed to bypass her stomach and the acids in there that would help her body use her food more effectively.  They had to work hard to convince me  that we needed to stick with a regime that means whenever Kaylee's tube blocks, kinks or gets pulled out we need to disappear into hospital (home of nasty germs) - and it will likely happen just as we are baking a birthday cake, or planning a trip somewhere or trying to just have ONE day of NORMAL.

The fact of the matter is, what is in Kaylee's stomach takes regular trips up to the back of the throat and quite often all the way out.  The more that is in her stomach, the more likely it is that a detour will be made into her lungs and start breaking down her lungs.  And research and experience shows that Kaylee's reflux is only going to get worse.

So we are in need of a surgical tummy renovation and until we get it, we are on the NJ tube.

Kaylee's tummy renovation will include a different type of tube which will go through the wall of her tummy giving her a cute party trick of being able to eat without anything in her nose OR mouth.  We  will be able to hook up her feed to a little tube installed on her tummy which will look like the bit where you blow up a beach ball.  It will mean no more NJ.

This is our next step.

And I am very ready to take it.

We just need to wait for the cogs to turn, the red tape to be cut and the paperwork to be done and it to be our turn.  So we are going home to wait and come back to Melbourne and do this thing.  And I will not be sad to say goodbye to our NJ.

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