Additional Needs

To Tube or not to Tube - Our Journey so Far

Posted by Ceri-Ann Brown on 27th July 2018 Additional Needs, Advice & Support

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NGs, gastrostomies, GJs and Jejunostomies.

For some people, deciding on whether or not to tube feed their child is optional.

It could be that the child struggles to keep hydrated, or they may fatigue whilst chewing and not take in enough calories; they may need medication that they refuse to take that could be dangerous if they miss.

Before Amy I had never even heard of tube feeding never mind known just how many reasons there could be.

For us tube feeding was never a choice. Amy has been nil by mouth since birth.

She started with an NG tube which was passed up her nose and threaded through to her stomach.

I look back on those days and wonder how on earth we got through it.

Re-passing her tube several times a day was soul destroying.

It was so distressing for everyone involved. We were constantly checking her aspirate to make sure the tube was in the right place, we were forever replacing the tape on her face which caused blisters on her skin.

Initially we had to bolus feed (gravity feed) every 3 hours through the night.

She would scream the whole time and the food would inevitably refill in the syringe and end up all over us and the floor.

We were then informed that she had "missed the window" to learn to suck.

Sucking is a very important mechanism in learning to eat. We were advised to have a gastrostomy placed.

The thought of surgically inserting a hole in our child's perfect little torso filled me with grief.

We put it off for months. We talked it over and over weighing up the pros and cons.

It seemed everyone around us, especially her professionals unanimously agreed that this was the right thing to do.

And oh boy were they right.

Once we had got used to all stoma and button management and learned how to set up pump feeds we were truly onto a winner.

It was the best thing we ever did for her.

Sadly, a couple of months later her fundoplication surgery failed.

This is an anti-reflux procedure whereby the bottom of the oesophagus is wrapped around the top of the stomach.

The reflux monster returned, she retched and bloated, she was a very unhappy little girl. We exhausted every option.

We tried several different formulas, we tried blended diet, we tried overnight feeding.

We eventually got to a point where she was on 24-hour feeds which is what we are doing now, 3 years on.

The last 4 years for me has been obsessively researching ways to improve the situation.

I sometimes stay up at night reading up on dysmotility disorders, volume tolerance, neurological impairment and its relation to feed issues and so on.

It's very draining but for the first time I feel like we are getting to where we need to be.

When the fundo failed we met with a surgeon who recommended an OGD.

This is where the stomach is disconnected entirely from the oesophagus and re-routed to the jejunum (intestine/bowel).

This is major major surgery and not a decision to be taken lightly.

After much deliberation and research, I asked for Amy to have a GJ button inserted. This would not be a surgical procedure.

They insert a dual ported button into the existing gastrostomy site and thread a tube through into the jejunum.

The benefit would be to see how her body digests food if we bypass her stomach.

We had a PH study conducted which revealed the reflux to only be mildly abnormal so I was adamant we get this GJ trial.

The surgeon was reluctant and insisted it would not be a long-term fix and may not work.

My instincts told me that we had to exhaust every other option before deciding on major surgery.

The GJ was inserted under sedation by a wonderful radiographer at our city hospital.

Over the next year or two she had the tube replaced several times like you would with a gastrostomy button.

The only difference was that this had to be under sedation and involved missing school and spending the day on the day case ward of the hospital.

It was massively inconvenient, but for the first time we saw Amy gaining weight.

After 11 months of static weight on 24 hour feeds our little girl was thriving!

My next step was to have her booked in for a separate jejunostomy. Our surgeon refused.

He remained adamant that the OGD surgery was required and that this GJ was not a long-term option.

He wanted to repeat the PH study as he felt that our main issue was reflux and that the results weren't correct last time.

I left heartbroken and deflated. I kept my cool the whole way home and sobbed myself silently to sleep.

Why aren't they listening?

Why am I having to fight?

Being the determined little annoyance that I am, I bounced back.

I spoke to Amy's consultant and requested a second opinion at a different city hospital.

We attended this appointment last week. It was at the bizarre time of 17:55 over an hour’s drive away from home.

The man was incredible.

He not only listened to everything I had to say, he validated my opinions and agreed with all of my findings.

He agreed that she would be a candidate for a separate jejunostomy but did advise that it may not work out long term how I hope.

This procedure hasn't been used a fix like this for a long time so there isn't a lot of clinical evidence for the long-term effects of this procedure for the reasons we want it.

However, we both agreed it was a far less risky and invasive surgery to put her through and theoretically - if the GJ button worked, then this should too.

We departed full of emotion. It was bittersweet.

Yes, I was listened to, yes, I feel my instincts are correct, yes, I have been a good advocate for my child.

But there is no denying how upsetting it is to have to opt into surgery for your own child, on more than one occasion as well.

The complexity of her gastro issues have me baffled on a daily basis.

I am always second guessing myself and hoping that we are doing the best we can for her and minimising the amount of intervention she has to endure.

I joked to a friend recently that we should be out choosing which scooters to buy for our kids, not deciding which surgery to put them through.

The friend in question is currently in our local city hospital whilst her daughter recovers from tracheostomy surgery.

Another agonising decision made by another amazing and advocating parent. My favourite thing about the tube is choosing nice new gtube pads.

I think this is the only fun novelty involved except for knowing your child will always be well hydrated, getting the right nutrition, and getting their medication correctly.

I know there are people probably reading this who are thinking "wow, only a few surgeries... my child has had 14 just this year alone!", and my heart goes out to them.

The feeling I had the last time Amy was wheeled into theatre and those double doors closed in front of me will never leave me.

I remember literally losing control of my legs and falling to the ground. I hope that this surgery helps her.

We are now just waiting for a date and confirmation that she doesn't have a mal rotated bowel or anything else that could add complications to the surgery.

I don't think we will ever become hardened to the ordeals our children have to face.

It might get easier as it becomes our new normal, but I will never be able to think that this is fair on anyone.

All my love to anyone having to make tough decisions for their child and hoping they did the right thing.

To those parents I meet in the hospital brew room - you are one of the things that get me through all of this.

I admire and respect all of them and their amazingly brave children.