Anyone With A Young Child That Has A Long Term Ng Tube In??

[mytwoangelsC&A]

Hi there, was just wondering if anyone else has a young child with a long tern naso gastric tube in, my 5\6 month old daughter has pretty much had one in since birth as she underwent heart surgery at 9 days old and simply won't suck, she is eating solids pretty well, but the biggest problem is the tube keeps coming out and what was organised with my local hospital on us taking her home has not happened and it is becoming a nighmare to get the damn thing out back in unless we go into the childrens over and hours drive, no one out this way seems compitant enough to do it?

[kiwibird27]

Hi

My DD had an NG tube for 6 months, before getting a gastrostomy, She also had one between permanent tubes. I was taught to do it myself by the local hospital, My PAED demanded it, because she didn't want me going backwards and forwards. Especially since my DD was severely hypoglycemic without feeds (she was on continuous). Once u do it the first time, it's really easy, just need to b careful with testing it's in the stomach, If she isn't on any anti-acid then it's even easier with the litmus paper (U probably use that anyway.)

Ask your doctor if he or she could request it, or find a nurse that will show u on the side!!!

I think people are just scared of filling the lungs with fluid but if your careful there isn't any problems. I know over half a dozen mums who do them themselves!!!

GOOD LUCK

[june05isttimer]

Hiya

My dd2 who is now almost 5mths old has had a NG tube since she was 8 weeks old due to an oral aversion she created whilst in alot of pain due to an undiagnosed protein intolerance and reflux.

She has no probs sucking and swallowing... she is just lazy and will only take less than half the volume per feed that she should due to a rather large habit that has now been created.

We have been lucky in that she has pulled it out a number of times but our local private hospital have been putting it in for us. (thank heavens for private health cover otherwise it would be costing even more!)

I soo want the tube gone now as there is no reason at all why she can't use her mouth and drink like other babies.

A tip we got told that has helped with the tube is to put socks on her hands at night when she has her long sleep. Dd2 was pulling out the tube at night where she would hook her finger up under her nose and pull it or she would grap the tube from the side of her face and just reef it off her face. We have found she has been unable to do this since putting socks on her hands at night.

Other than that I say goodluck. !!!!! I hope your baby's habit is easier to break than ours!

[naiwen]

Get them too train you in putting it in, it is really not hard and heaps of mums do it. I got them to show me (DS came home with one) and the only tricky bit is getting them too stay still while you do it IMO!

[Nowhere]

hi there

Mikenzee had a NG for about 15 months before getting a gastrosomy and I agree they are night mare to get in and out I did learn how to re insert it but often couldnt due to her spasms in her esophagus tracea ect so on them ocasions wich ws more often than not we would have to go to the hospital ( when wsant inpatients ) and get it put i a such a treck I know

I would sugest asking to learn how to re insert it, the other thing i would be asking is how long they expect her to be tube fed if it is long term or indefinately i would be talking with then about putting in a button ( gastrostomy ) yes its an operation but once its in its in and no more messing around KWIM, and the added thing of not having to hold the poor litle darlings down for tube changes every few days

Just t check as wel as i akways do what feeding pump do you use, and what feed not sure if you know if bubs is on a nutricia feed then you are eligable for a free infinity pump through them its the best tiniest pump in the world and so much lighter so if you are useing on of the old kangers let me know and i wil get you the details for the pump

[mytwoangelsC&A]

Hi there, thanks all for great replies, my little ones tube is indefinatly, was originally told two weeks, but 6 months later still in! It is now a habbit that needs to be broken and is proving very difficalt to do ao, most time we don't suck from the bottle at all. We have private health but find it better to be a public patient otherwise we get charged for everything. The hos i had her won't have a bar of us now, they are private hos. We are currently under HENS program so most things are supplied for free we were supplied with a weights hanging kit at the start but when i use it she either pulls it out or vomits even on the slowest setting, she has always had a problem with tolerence of feeding and has been pretty good over the last few weeks. So i use a syringe and gravity feed, its not that bad she is only on 100mls with polyjouile to bump up the calories.