To Tube Feed or Not?

Should we struggle on as we are? Spending hours every day trying to get our daughter to drink minuscule amounts.

To force medications down multiple times a day.

The stress and the anguish this causes the whole family.

Should we risk an operation and scarring our daughters’ beautiful skin to place a feeding tube?

To have the ability to hydrate and medicate without causing distress.

These were the questions we asked ourselves early last year. We had reached crisis point.

Violet had always struggled with oral intake of fluids and medications but as time went on it got worse.

To the point that we were lucky to get 500ml in her a day. That was with us offering her fluids almost all day long. It was full time job, just keeping Violet hydrated.

Violet's health was suffering, she was constantly having bowel issues, her epilepsy worsened and her general health was on a decline.

Lack of fluids was compounding all of the issues.

We were as a parent team discussing the possibility of tube feeding for the first time and it hurt our hearts.

We felt as though we had failed as parents. But the more we discussed it the positives outweighed the negatives by far.

We had made a decision but were yet to discuss this with Violets medical team.

Ironically it all came to a head that same week that we made the decision to look at tube feeding.

The day we were due to meet with Violets paediatrician, I collapsed from stress and exhaustion, luckily that was all it was and nothing more sinister.

Later the same week, Violet contracted gastroenteritis.

We couldn’t replenish her fluids as needed. She was hospitalised and she had a nasogastric tube placed.

Initially it was a bitter pill to swallow.

We had the amazing opportunity to hydrate Violet to the required levels for the first time in her life without causing her distress.

But she had this alien tube attached to her face.

It amazed me how quickly we all became accustomed to the tube.

It was just part of Violet now.

The feeding was straight forward and we settled into a new normal routine.

Violet was keen on pulling it out at every opportunity so we had multiple trips to the children’s ward or nurses coming to the house to replace them.

The hardest part for us as parents were the reactions from other people.

Violet was now visibly different, we had stares and some comments which hurt.

Luckily, I was able to rise above it just smiled at everyone who stared, after all being curious is only natural.

Long term we knew that a nasogastric tube would not work for Violet.

She pulled them out too frequently and her sensitive skin on her cheeks was terribly sore.

So, we decided to go ahead with a gastronomy after six months.

This was Violets first operation in a hospital away from our local area.

We were daunted but as always Violet was amazing and even the surgeon was astounded to see her so happy and cheerful the morning after the tube was placed.

After a very short spell in hospital we were home.

Through trial and error, we got a feeding pump routine in place that worked for Violet.

It wasn’t what was initially suggested but we’ve learned through this whole process that nothing ever goes as expected.

Violet had a few small infections early in which were effectively treated with antibiotics and a small granuloma which is excess scar tissue which was effectively treated with silver nitrate.

Violet's stoma site healed incredibly well and hasn’t caused any issue since.

Violet has since had a button fitted which is so much better for us.

Violet has Dystonic movements and grabs at things involuntarily, this often meant her GTube was pulled, I was always scared of it getting caught.

Now this tiny neat little button is unobtrusive and is quite literally a life saver.

I was nervous and scared when I first had to give Violet NG feeds, change the tape on her face and again when I had to learn a new process for her gastronomy.

It’s natural to have that fear and it means you care because you don’t want to get it wrong.

As everything else, it soon becomes part of your normal routine and you almost forget how awful giving fluids used to be.

I cannot express the difference tube feeding has made to Violet and to us as a family.

The stress and anxiety regarding Violets fluid intake instantly disappeared. It was an all-consuming weight we had on our shoulders.

We wished we had made the decision earlier.