Are any of your DCs fed by NG tube?

[Mouseface]

Hi

I'm not sure if I'm in the right talk topic but thought I'd ask, hope that's ok.

My DS 11mo is fed by NG, always has been due to physical health issues and development problems. He has never orally fed and has no interest in it (that's another post!). His NG is a plastic one and is supposed to be replaced every 7 days. He does pull it out now and then but more often than not, it stays put.

His CCN has suggested that because he gets SO distressed when changing it, go to 10 days instead. There has also been mention of a silk one but that was "no no'd" (not by me) as they are tricky to pass and if he pulls it out, it'll be more hassle than putting a plastic one back in?

It would seem he'll be fed like this for a while yet and I wondered if any of you change them after 10 days or longer?

My 9 month old daughter has an NG tube, she pulls hers out on a regular basis. If she pulls it out the same one is just put back in until it is due for a change. The tube is changed monthly and is a plastic one. Is there a reason why you have to change so frequently? I was under the impression that a month is the standard time? I could be wrong though, or it could be different area policies....

jillycats - That's what I was always told, from the neonatal unit days too!! 7 days and then change it. He does get so very upset and I HATE HATE HATE being the bad guy all the time. My DH can't change the tube (don't ask!!) and TBH, I can't see how leaving it longer would be an issue as long as it stays clear at the end?

Hiya
I am paediatric nurse and we always use silk NG tubes rather than plastic as our policy is to change plastic ones weekly-they do start to disintegrate aftr this time.
Silk ones are imho easier to pass than plastic as they have a guide wire inside which makes them stiffer-you then remove it when the tube is down.I reckon most children say to me silk ones are more comfortable and I really dont think they are easier to pull out-many hospitals are reluctant to use silk ones because of the cost but I wouls strongly recommend them.
HTH

Hi Mouseface, my dd2 was tube-fed - now has a Gastrostomy peg.

Sorry its a pain to re-position - sounds like oddgirl has good advice. Can you emphasis to a friendly paed how stressful the re-positioning is for your ds, and get them to recommend the silk ones?

I honestly can't remember now how often it was changed - it was infrequent. When it came out betweentimes I soon learned how to do it myself with the minimal fuss, to make it less stressful for dd2 and myself.

And my dh also will not change ng or gastro pegs. He will change gastro balloon water under duress. If for some reason I wasn't able, I'm sure he would find it within himself to do it - I suspect its just easier for him not to learn.

Hi again

Oddgirl - the tube we use has a guide wire and is polyurethane (plastic?). At one point we were told to leave it 6 weeks and I did find it wasn't so good then, but it seems fine monthly.

Mouseface - I didn't want to learn to put the tube in at first but I'm a single carer and dd was pulling it out so often that in the end I gave in. It is definitely better than keep going to the hospital. I'm lucky that my dd isn't generally that fussed about having it put in.

Anyway, I have to go put it back in now as my dd pulled it out mid feed at lunch time.....

Melted, thanks. And Oddgirl, guess the tummy acid does them no good! The silk one was obviously a no go due to cost but as this pans out, it would appear that for now at least, he'll be tube fed.

That's until magic wands are avaiable on the NHS!!!!! One can dream.............

Will talk to lovely CCN and see if I can get them. I guess I'll need re-training to pass it though??

Silk tubes are soo much easier than plastic.

Mouseface-if you can pass a plastic one you can pass a silk one I promise you-much easier for you and for the child as not so hard at the back of their throat. They tend to be longer but you can get shorter ones I think.
We change our silk ones monthly jillycats so guess same as your polyurethane ones but I am sure you could keep them in longer but I work with severely immunesuppressed children so we err on the side of caution regarding any potential for infection...I still think the cost thing is a bit of a red herring given how much more robust/comfortable/easy silk ones are!
Best of luck

My DD was tube fed for 3 years. 1 yr ng 2 yrs mickey button.

We had a silk one which she vomitied out 5 times a day! I learnt to pass it really quickly without the guide wire in as this was the only thing that upset her.

My DD was NG fed with silk tube for 6 months prior to PEG being fitted. She pulled it out every morning at about 7.30am! No idea why, she just liked to. So I had to replace it daily, but like the others have advised, I would still use the same tube for up to 4 weeks (but no longer was the advice from our nursing team)
Kirsty x

Thanks for all your help/advice. Will be speaking to CCN next week re trying a silk one.

Mummuy2oandh - what's a mickey button?

In reality, some days I wish he'd eat........

Then I get over it, thank my lucky stars he's still here and carry on!!

Nearly Easter! Yum!

My dd had a ng tube for a year she now has a peg fitted and will be having the mickey button fitted July timeish..

She pulled her ng out daily 3 or 4 times a day it was a nightmare she had the single use ones at first and dh learnt to pass them ,then we went onto the silk ones which were he found a lot easier to pass even without using the guide wire and then she went onto the monthly use one as silk one was coming out every 5 minutes.

I would say ask for your lo to have the peg fitted it has made our lives hundred times better x

A Mic-Key button is a low profile 'button' type of thing that sticks out of the stomach, you then attach a tube to feed DC, the other option is a permanent tube or PEG. The Mic-key is better!

Hope this helps x

adoptivemummy - Yes, thank you. If I'm honest, I feel a bit like I've let him down by not managing to get him weaned. It's a very long and emotional story but I've tried so hard since DS was 16 weeks on the advice of virtually all of his health profs. He's now 11mo. Won't let me near his face, doesn't drink, chew, put anything in his mouth.

Apparently, Pierre Robin babies are often like this but do you know what, no-one said this could potentially happen. They all just let me plod on, in tears some days, trying to get him to eat. To add to that he has heart issues and this can sometimes affect eating but again, I have only recently been told about this.

I'm quite scared at the thought of him having a permanent button or tube but realise I have to do what's best for him. How long would it be for or does that really depend? It seems like we get over one thing and fall into another! Oh dear, feeling sorry for myself today

Mouseface the button and peg can be removed once it isnt needed my dd has the peg it is being replaced with the mini button in couple of months it isnt going to be there forever just unitl the problem that means she has it there is fixed and she has learnt to drink safely and eat better than she does atm.

Once it is removed she will have a small scar that as she grows will fade, the button and peg are so much nicer than the ng less stares, no fighting to get ng down etc (he might not be allowing you near his face because he scared your putting tube down) Also we have found since dd had her ng taken out and peg put in she is less ill and has started to babble she also eating a little better than she was with ng in.

Dont be scared xxx

OMG janmumto5 - I think you're right re the whole not letting me near him! He gets so distressed when I have to pass the tube. Even when I just change his duoderm it's a battle. I wondered that when this all started but told myself I was just being daft, almost making him have a phobia that wasn't there IYSWIM.

I'm glad your DD has responded so well. Hopefully, if it does come to that, DS will be much better off too.

Thanks!

Kayleigh-May had to have duoderm OVER her ng tube to keep it in place and to have tube passed it got to the stage where three of us had to do it her dad passed the actual tube and found it quite distressing because of her reaction.

When she had peg fitted she went from being very poorly every couple of weeks which resulted in constant hospital admissions, huge weight loss and always sleeping to a happy alert baby, she gained 2lb's within 3mths of havin peg fitted and more active and actually eating bits of pureed foods she is totally zero fluids by mouth due to aspiration tho.

Hope your ds starts getting better sooner for you and i highly recomend the peg xx

Mouseface - hello

There are many children sadly that I know of with heart problems that will just not eat.

I don't know if you have seen heartline www.heartline.org.uk/ but if you go on the forums there are lots of posts about eating (or lack of!).

My DD started eating after 3 years when her heart was fixed. Is totally amazing - we never thought it would happen.

Mummy2oandh - Cripes! 3 years? How did you cope? Well, I guess you just do!

I'll have a look at that thank you. I knew we'd have feeding issues. My DH is very much a "it'll be fine" kinda man as he looks the other way but I'm more of a "oh dear, I have a bad feeling about this" like I know in advance, a gut feeling????

Every now and then we have a tiny light at the end of the tunnel when he puts his fingers in his mouth (I've tried food on them but he rubs it off, really funny about having stuff on his hands) or a soft toy but then he stops.....