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Don’t fear the tube

Don’t fear the tube

When we were told Alfie had an unsafe swallow and would need a feeding tube, it felt as though it was something else for us to grieve, another loss to overcome, another thing to learn and get used to.

All I could think of was how much Alfie had lost, how much he enjoyed food and would miss it, how far he had come in learning to feed himself his drink and how heartbroken I was.

All I could see were negatives and how it was one more thing for us to go through.

Another parent was in x-ray at the time we found out, I was sobbing after Alfie’s barium and asked her about her child.

He had a feeding tube and was having a feed whilst we were sat there.

It just looked so clinical and I was terrified.

I was horrified when she said she loved her child’s tube. How could she, I thought.

I judged and I could not understand how she could feel anything but upset towards it.

But Alfie has been tube fed since May 2020 and I now know what she means.

Our tube feeding journey has not been easy by any feat, but nearly 1 year on and Alfie is doing so much better and the benefits of the tube far outweigh the loss.

Alfie is healthy and well, he is gaining weight and the stress of Alfie not eating well or drinking enough has gone.

Alfie is allowed food orally for taste and oral pleasure provided they are not liquids or similar but are also not completely solid- basically foods that melt are ideal such a quavers or very thick yoghurts.

Instead of sitting and slowly feeding Alfie for hours and pushing when he is tired, we connect his tube and away we go, whether he is awake or asleep.

Gone are the days of falling asleep worrying that I would need to make sure Alfie ate more the next day, now I know exactly how much Alfie has had and the calories he has consumed.

Sometimes it does feel too clinical, and of course I wish Alfie were able to eat orally safely, but he cannot, and we have to make the best of what we have.

The most important thing is we have a way to feed Alfie that keeps him safe.

Firefly Blog

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

Rebecca Highton

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I am a mum of twins, one has special needs. I enjoy blogging about life and the reality of parenting.

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