Long Term Tube Feeding of an older child (toddler)

[katanya]

Hey Kirsty

Theresa asked me to pop in to add any advice I have for NGT for toddlers. Felix my son has had 2 "weight gaining stints" once when he was 11months-13 months old and the second 18 months till 22 months. Felix has a chronic respiratory condition (since birth) that affects his weight gain as he burns calories like no ones business, and combinded with poor eating ..NGT.

The firs time I found him pulling it out more TBH when he was younger(11-13 months) every week we were turning up at the hospital to have it reinserted. when he was older (18 montsh -22months) he actually decided to accept it more. The onlt times it came oput was when he had colds and it slide out. Unfortunately he has a unusual nasal cavity and insertion by myself was impossible and everytime they inserted it it was a big deal at the hospital.

as for tips
yep I did the thread through the clothes trick, I learnt this before the NGT as Felix used to be on night oxygen as well and so we had all the tubes running through, like you pointed out having a second anchor point was also helpful.
I am not sure where you are but here in QLD summer it is soo hot and we used ice packs to strapped around the feeds at night to keep them from spoiling. Felix was on a continous feed of 800 mls overnight of pedisure can't remember the rate?

I think for Felix being older he was more aware the second time around socially of his tubes,as people react really weirdly to them, they sort of started and treated him like he had a disability,and I think we was aware of it. He still remembers his tubes and we look at photos and he points to them

as for the permenanent tubes versus the clear tempory ones, TBH if they are being pulled out frequently, the short terms ones are actually softer and easier to reinsert I found, we couldn't insert the permenant ones sometimes due to Felix's cavity and they told me the tempory ones can be left up to 2 months anyhow.

something else to watch is their noses spliting and cracking on the side where the tube is pulled across, you can put vaseline there but changing sides when you can (obviously the trauma of reinsertion can be worse)

One a postive my son is now 2.5 years old and onto the charts, he is eating and thriving on hsi own accord, he'll never be chubby but now has a fair appetite and seems to consume enough to manage growth on his own!I hope we never see another NGT again.

I know exactly how you feel, it's something I would never choose to do again but it helped Felix gain enough for his surgeries and to get his metobolism going again. It is worth the anxiety when you see the bones covered up and their growth continues like it should.

anyhow please email me if you have any more questions, all the best with it!