Feeding Tube Awareness Week

This week is Feeding Tube Awareness Week 2012

The goal of Feeding Tube Awareness Week it to spread awareness and educate as many as possible through Facebook status posts, notes, twitter, blog posts, email…basically however, you want to spread the word. The topics below are a guide. They will be posted daily on the Facebook Page but also encourage you to use them in your posts to others.

You can find out more about Feeding Tube Awareness week by clicking here or visiting the Facebook page

Each day has a different topic for discussion, today’s is  ”Understanding Life with a Feeding Tube – Explaining a day in the life/daily routine of tube feeding and all it requires”

A number of families known to SWAN UK rely on feeding tubes for their little ones . .  they told us:

Lennon

“He has had a feeding tube since birth, due to dysphagia, malabsorption of the stomach, severe reflux, aspirate pneumonia, chronic gut failure and chronic renal failure. He has a gastrostomy on 24hr drainage and a jejunostomy on 24hr feed. he also has a picc line for twice weekly bloods. Without his feeding tubes he wouldn’t be here x”

Freddie

“Freddies feeding tube is a massive part of his life. It’s his way of staying alive. Without it i don’t know where he would be. 

Since birth Freddie was a bad eater. But for the first few weeks of his life I manged to get enough milk into him to keep him satisfied.
Freddie first started being fed via an ng tube at 8 weeks old. He was diagnosed with a milk protein allergy & reflux & his weight had dropped very low due to him not eating. He wouldn’t suck on his bottle properly so was barely taking any milk. The tube was only meant to be temporary. We expected it be there for a few days until they could help him realise how to feed from his bottle properly. Several different feeding specialists tried to show us different ways to feed Freddie but to nothing worked. So after a few weeks in hospital we were discharged home with the ng tube in place.

Freddie would constantly pull the tube out & repassing was so hard due to Freddie having such small nasal passages. So everytime he pulled it out we had to go to the hospital to get it repassed. We would end up down the hospital nearly everyday getting it sorted. The tape would irrate his face & he would end up with such sore skin.

In January 2011, at 7 months old the doctors decided that a feeding tube wasn’t going to be a tempory measure for Freddie. He was taking very little milk orally & wasn’t taking to pureed food. So they booked him in for a gastrostomy operation.

Having this operation done definatly made life easier for us. Although it did come with its own problems. It had to be kept thoroughly clean & we had to make sure Freddie didn’t pull on it. The tube was fairly long & one day when Freddie was sat in his highchair it snuck it’s way out of freddies clothes & got tangled around the chair. I didn’t realise & went to lift him out of the highchair & almost pulled the tube out of his stomach! Luckily I realised before I lifted him top high. It could of been a nasty accident.
6 months on from the gastrostomy Freddie had another operation to change the peg to a mini button. This is alot more discrete & was definatly the right option for Freddie.

We use Freddies tube 3 times a day for milk & another 3 times a day for meds. I’m not sure how we would cope without it. I supoose we wouldn’t.
Freddie manages some pureed food. 1/2-1 weetabix in the morning & 1/2 jar of baby food for tea but it’s more a case of me putting it in his mouth rather than him eating it from his spoon. He won’t let any solid foods in his mouth & the sight of it coming towards his mouth will make him vomit.
Hopefully one day we will be tube free but for now the tube is very much a part of our lifes & the fact it keeps Freddie nourished makes it so important for us.
 

Read more about Freddie here

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