Additional Needs

Welcome to tube feeding awareness week!

Posted by Ceri-Ann Brown on 10th February 2020 Additional Needs, Advice & Support, Disabilities

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This years one marks almost 6 years of us being tube feeding extraordinaires!

Each year I like to reflect on our feeding journey. It has been an arduous battle.

There have been many tears shed, many head in hands moments, many late nights desperately seeking out advice from other families and obsessively searching for ways to improve things.

For those who don’t know. My daughter, Amy-Rose went into shock when I was in labour.

She sustained a severe brain injury and as a result has quadriplegic athetoid/dyskinetic cerebral palsy. She has epilepsy and has been tube fed since birth.

These days I am unaffected by the stares we get when I administer meds in a cafe.

I don’t care if someone looks for just that little too long, makes eye contact and then looks away embarrassed. It used to make me feel really self conscious and upset.

Why couldn’t we be like that family over there arguing for our child to eat one more chicken nugget? How I longed to argue over her eating one more spoonful of peas before she could have an ice cream… how I still long for that.

But as time goes on, acceptance grows. I have a wobble every now and then, sure.

But generally I am happy that we are able to give her what she needs and that her nutritional needs are mainly being met.

I recall in the early days first seeing that yellow tube in her nose. All I could think was how uncomfortable it looked and also how unnatural it was on her perfect little face.

I immediately took a dislike to the tube, unaware of the chaos it was to bring us over the coming months.

We had the issue of her constantly pulling it out, the bright red sore skin from the tapes/plasters, the non existent aspirates and then trip to hospital to check it was in place.

I remember bolus feeding her every 4 hours, even through the night.

Willing desperately for the milk to go down… but then having it pour all over both of us when she refluxed and it forced it all back out. It was completely soul destroying.

Every few weeks we would appear at the hospital either to see speech & language in hope of trying some dummy dips to encourage oral feeding - or in in floods of tears because she wouldn’t stop crying and arching.

They were honestly the hardest times of my life. I still can’t believe how we got through it.

We delayed getting a gastrostomy. We were terrified.

At 10 months old we got a gastrostomy and fundoplication (they wrap part of the oesophagus around the top of the stomach to help ease reflux). Initially it was a dream. No more nasty tape, no more sore face, no more constant tube repassing.

However we quickly learnt that managing a stoma site can be a tricky business. With the best care in the world ie weekly water changes, daily (sometimes twice) cleans, barrier creams, dressings, gauze, tube pads - some stoma sites have their own agenda.

We battled (and still do to a degree) with over granulation. This is where the hole thinks hey I’m not a natural hole, let’s heal up. And it can get really nasty looking.

Eventually Amy’s fundoplication failed… she projectile vomitted through it and we knew it was game over.

It took a long time to get to where we are now. Initially surgeons wanted to entirely separate her stomach from her oesophagus (it’s called an OGD).

It is a massive massive surgery and we simply had to exhaust all other options first.

So we went for a GJ/Peg-J. This meant we bypassed Amy’s stomach and fed her bowel instead to prevent it refluxing up.

It was great but every time it needed changing it involved a day in hospital, and sedation which of course has its own risks. So now we have two tubes! A separate G and a separate J.

A nurse recently asked if we have special names for the two buttons. I was amused but no, we haven’t got names yet. I thought maybe Guinevere and Jemima, but I’m not fully decided yet.

Amy is still fed over a 24 hour period. She still has abdominal pain. We still aren’t meeting her calorie or fluid requirements. We are soon going to the city hospital to explore the option of a ketogenic diet in hope of improving her seizure situation.

I am nervous as it isn’t a simple case of changing formula… and in any case, formula changes have generally been disastrous for us. So I am cautiously optimistic.

I used to hope hard for her to learn to feed orally. But now I’d be grateful for her gaining weight, having energy, and being comfortable. I feel that’s all I can ask for right now.

The tube is often one of the first things they notice about Amy.

This makes me kind of sad. They see the wheelchair, the splints, the tubes, the uncontrolled movements.

I get it, you don’t see many amazing kids like mine around - she’s a bit different, but that’s okay.

I just wish people would come and say hi. It’s such a great way to educate people on the different ways people do things.

Amy is just like other children, she just needs more help, she may have medical stuff going on, but to her she couldn’t care less that she has two tubes… she just wants to laugh, play and sing like any other kid.

I am so proud of what she has been through. She takes all of the challenges on like they’re no big deal.

She plods on day to day and embraces life to the fullest. Much as I hate the feeding pump for keeping us up all night, much as I hate the smell of formula, much as I hate drawing up 20 syringes of meds per day - it’s an intervention that if it didn’t exist nor would my daughter.

And quite frankly, that doesn’t bear thinking about.