Additional Needs
Age Appropriate
by Jodi Shenal
on 26th April, 2024
My boy with two buttons
Posted by Emma Louise Cheetham on 18th February 2020 Additional Needs, Advice & Support, Disabilities
It’s 10.30pm. The relentless beeping of Jaxon’s feeding pump is showing no mercy.
I’m frustrated and find myself shouting at this inanimate piece of equipment that keeps my son alive by providing him with the nourishment that he needs to thrive and survive.
Feeding tube awareness week has just passed.
Something I knew very little about before Jaxon was born but something I’m almost an expert in now.
I say almost because even when you believe you know everything there is to know about this method of feeding, tubes or pumps have a way of throwing an unexpected curveball from time to time.
Jaxon has been tube fed since birth. For the first nine months of his life he was fed via a nasogastric tube; a tube that goes up his nose and down into his tummy.
I was reluctant to take the next step by putting him forward for gastrostomy surgery because deep down I believed he just needed a little more time before he’d grasp oral feeding.
Looking back, my decision to refuse surgery initially just prolonged our agony and I wish I’d accepted the inevitable sooner.
Life is so much easier now with a G tube.
Despite Jaxon needing to go to intensive care for a few days following his surgery and spending a further five weeks in hospital whilst we found a feeding regime that worked for him due to him not being able to initially tolerate gastrostomy feeding, it’s not a decision I regret in the slightest.
His reflux has improved, he’s gaining weight like never before and no longer classed as a failure to thrive, there’s no more frustrating trips to hospital to get an x-ray to check the NG tube is in the correct place and no more waking up to find a yellow silk tube wrapped around Jaxon’s wrist when he’s yanked it out during the night.
A couple of weeks ago someone said to me “it’s not much quality of life for him is it, not being able to eat?”
It took me by surprise and made me question Jaxon’s quality of life.
He has plenty of challenges that affect him so to the outside world his quality of life may seem pretty poor.
There’s challenges we’re addressing every single day to improve things for him.
Being a tube fed baby is NOT something I recognise as giving him a poor quality of life, ultimately it gives him a life.
It gives him the opportunity to be here. Without his tube the reality is he wouldn’t be alive.
Even if he was, if we forced him to feed orally, chances are due to his brain injury he would likely suffer from frequent aspiration.
He wouldn’t gain weight, he’d suffer more chest infections than he currently does and he would be entirely miserable.
So as I shout at the feeding pump for the 30th time this evening, I’ll remain thankful that it exists.
I’ll be thankful that my boy has two buttons; a belly button and a gastrostomy button.
I’ll be thankful that the fact he is unable to orally take nutrition does not mean he can’t live.
