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Tube vs Food: are we making the right decision?

Tube vs Food: are we making the right decision?

He was weak and tired and needed it to be just a little easier to get milk. After trying everything we had to get him on the bottle for his health, his jaundice was very apparent and he was sleeping a lot.

Once he got the knack of drinking from a bottle, there was no stopping him, he was a greedy boy, nothing pleased me more than giving him a bottle and having to up the ounces so quickly.

Very soon it was the next stage! FOOD! And didn't he just love it!

There was nothing Zachariah didn’t like, he would eat and eat and eat. I was so pleased to see him enjoy the adventures of food.

But then there was the drink, I tried to give him bits of water from his bottle, but he would struggle so much, he would gag and cough and almost choke from little bits of water.

I put it down to it being a different texture to milk, it was fast flowing and he would get used to it.

At seven months old he was referred to a Speech and Language Therapist. Who knew that they specialised in feeding as well as communication?

I remember feeling rather confident attending this meeting, as this was Zachariah’s strong point, he was good with his grub, and this was time for him to go to an appointment and show off his skills.

However when she watched him eat she was concerned, she started to talk about aspiration and a videofluoroscopy. What is she talking about?

This was the start of something else, another issue to to worry about, someone else to come to our home monthly. I was gutted.

The therapist started her visits and taught me how to feed Zachariah the safest way, he was introduced to thickener to allow him to have fluids and had to stick to a blended food diet, he tried little bits of toast and soft snacks, but it was just not worth it, it was such a hazard as he would gag and struggle.

He had a videofluoroscopy which showed he was aspirating and that concluded that it would be much safer for Zachariah to be tube fed. I was devastated. 

I didn’t really believe it, my little boy who loved food so much would have it taken away and have it pumped straight into his tummy instead.

His favourite part of the day was being ripped away!

At first we refused, said no to his consultant and no to the surgeon, we couldn’t give up on him yet.

A few months passed and it was clear that Zachariah was only struggling more and more, it wasn’t worth the risk anymore. I just wanted him to be safe.

I started to look at the positives, that he would have stress free days fighting with food when he wasn’t feeling great, he would get all of his medication as he wouldn’t be able to spit it out, and he would have more time for fun and therapy.

So now it’s the waiting game for his date to go and have a gastrostomy, and all I can question is whether or not we're making the right decision!

I love my Boy!

Rochelle, Mummy to Zachariah. Xx

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

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Meet Our Blogger

I am parent to a gorgeous little blue eyed boy who has complex needs. I have a Facebook page, 'my daily miracle' where I share our life with others. I am an active parent who's working hard to make Zachariah's world more inclusive for him. I like to look at the positives and celebrate everything, but I'm also not afraid to show it how it really is when life gets tough.

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