This has been NasoGastric (NG) Feeding Tube Awareness Week. I've needed NG tubes at three different times, now. Mum hates NG tubes, but we thought we needed to acknowledge NasoGastric (NG) Feeding Tube Awareness Week. At different times, NasoGastric Feeding Tubes have kept me alive. I was born too early. I was a sick baby, had problems with breathing and had bad reflux. Because I was born so early, I hadn't developed my sucking reflux, and couldn't drink. I needed a nasogastric tube, just to survive. |
I hated the tube. From early on, I learned to grab it with my tiny fingers, and pull it. Most kids in the neonatal intensive care unit had the tubes changed once a week. Not me. I was lucky if my tube lasted two days. One day, I needed the tube to be changed three times. I learnt to push my tongue against the tube when the nurses tried to put it down my throat. I refused to swallow it down for them.
I refused so much, on one occasion, that I stopped breathing, went purple and needed resuscitation, after they had made a few attempts to insert the tube.
Once I developed the sucking reflex, Mum wanted to start breast-feeding me. She had been expressing milk (which was put in my tube) for so long, and just wanted to see whether I could feed on my own. Most of the nurses told her I wouldn't be able to do it. But, Mum was stubborn. She knew I would be able to, and she persevered. She hated the tube, after a while, because it meant I couldn't make a decent attempt at attaching to her boob. (There was a tube in my mouth!) And, with the tube, I was getting a constant supply of milk into my stomach, so I was never able to feel hungry. It was hard for me to learn to want to drink milk.
Eventually, when I was about three months, a nurse told Mum to let me try, and guess what! I started my first breast feed!
When I moved to Wollongong Hospital's neo-natal intensive care unit, I still had my ng tube. After about a week, I pulled it out, again. The nurses replaced it, and I pulled it out, again... It wasn't long before the nurses decided not to put it back in.
I guess it was for about 13 weeks that the ng tubes kept me fed.
The second time I needed the ng tube was for my hepatoblastoma removal surgery. I wasn't allowed to eat for five days, after the surgery on my liver.
When the tube was pulled out, I got straight back in to eating.
The third time I needed an ng tube was after my femoral osteotomy surgery. After not eating for a day, the tube was inserted into my stomach. When it was removed, it took me a week to re-learn how to eat. I had forgotten how to eat. I couldn't chew. I couldn't swallow. I didn't drink. It was an awful time, and I fought with Mum, Dad, my aunt, everyone... They were scared and frustrated, and I had to work hard, to learn to eat. We got there, finally.
I am actually pretty good at eating, and chewing... most of the time. I can be fussy, and I can have bad eating days, because of my cerebral palsy.
I'm lucky, because a lot of time and effort has gone into helping me eat.
Even when I was having chemotherapy and had mouth ulcers and throat sores,
I was still eating, and didn't rely on an ng tube.
Needless to say, we understand the importance of the nasogastric tubes, but Mum and I hate them, and Mum shudders every time the word is mentioned.
She does not want me to have to rely on one. She knows many people with my level of cerebral palsy require ng feeding tubes.
And so, while we don't like nasogastric tubes, we know I have needed them, and they have helped keep me nourished and hydrated. They have helped keep me alive. And so, we recognise NasoGastric (NG) Feeding Tube Awareness Week.
(In these photos, you can see my ng tube, and you can see Mum feeding me.)
A nasogastric (NG) tube is a long, thin, hollow tube which is passed through a nostril of the nose into the throat and down into the stomach. The tube is used to feed people, if they are unable to take food by mouth. Fluids pass through the tube into the stomach.
Generally, a child will be given an NG so that specially prepared liquid food can be put down the tube. The reasons your child might need an NG for feeding include:
- problems with sucking and swallowing;
- not getting enough nutrition through their normal diet;
- cannot swallow the medications they need;
- sometimes, an NG may be used to empty the stomach contents.
Royal Children's Hospital, Melbourne
Read about:
My first month
We nearly lost him
Dexter's 2013
Dexter's Vision
Dexter's Cerebral Palsy
Dexter's Cancer
Who is Dexter?
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