A Button – The Best Decision We Made

Amy Cameron by Amy Cameron Additional Needs

Amy Cameron

Amy Cameron

I’m mummy to 2 boys with very different needs - follow us to see how we live a different kind of normal.

I wanted to share about our experience of tube feeding with our son who has spinal muscular atrophy.

This condition is a muscle wasting condition and so Zac doesn’t have the energy to be able to get through a full meal three times a day and the amount of food he is able to eat is not enough to sustain growth or health.

Just before we received a diagnosis meal times were becoming tricky with Zac – he was tiring really quickly and was only able to eat small amounts of soft foods.

I was constantly battling with him and trying to force feed him. It wasn’t pleasant for any of us.

At diagnosis 2 years ago Zac’s weight was plummeting and he was becoming weak very quickly.

We knew we couldn’t go on as we were and we needed to find some solutions to feeding.

We tried a nasal gastric feeding tube for short term feeding but Zac did not tolerate this very well and we were back to the clinic for more discussions.

It was decided that although Zac was very weak having surgery to have a tummy button was the best option.

The surgery would be a big risk for Zac as with his muscle condition anaesthetic needs to be considered very carefully.

However, we found a surgeon who we felt really confident in and it was decided that for Zac to have a good quality of life and to help him maintain the best health he could this surgery had to be performed.

I went through a whole range of emotions – I was upset that my son wasn’t going to be eating a normal diet like the rest of the family, I was worried that not eating would isolate him socially, I was anxious about learning how to carry out feeding and care for his gastrostomy.

But I knew that this decision had to be made, I knew that by doing this I was giving Zac the best chance of a happy life.

I felt relieved that I’d no longer have to calorie count and force feed.

The days leading up to the surgery were difficult – in order to keep Zac as strong as possible he needed to have high calorie energy feeds and I had to physically syringe these into his mouth every hour or so.

We couldn’t go out for family days because Zac needed to be fed every few hours and this was too stressful to do while out and about.

I was exhausted with it all and the pressure I felt was immense.

My days were spent calorie counting, battling and force feeding in order to keep my son alive.

The surgery day came and almost instantly I felt the pressure leave me. I saw my little boy with his button and actually it’s really small and discreet.

The care for his button was really easy to learn and actually doesn’t add that much extra work to his daily routine.

We learned how to use a feeding pump and after a few days we were allowed home.

That was the best decision we made for Zac – it’s been 2 years and Zac has kept in the best health, he’s putting on weight and thriving.

The pressure is off – I don’t need to count calories because I know Zac is receiving all the nutrition he needs through his button.

He can be fed anytime, anywhere and very discreetly. We can go for family days out and Zac can be fed through his button without any stress.

Zac can still sit at the table with us and join in if he wants but there’s no more battling or force feeding.

The energy he has can be used for fun things and he can enjoy life without his body having to work hard to get the energy he needs.

For anyone struggling with this decision or for anyone who may face these discussions in the future I can honestly say it’s the best decision we made for Zac and it’s something that has allowed Zac to be able to enjoy his life to the full.

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