I'm currently sitting in hospital with my little guy who just turned 1 last week. He has had a NG tube inserted today, which he will need for roughly 3-6 months at this stage. We are only in here over night, should be going home in the morning. Just wondering from all those parents who have previously or have currently, got a child using a NG tube, are there any amazing support groups/pages that you have found that you could reccomend?? I don't have any specific questions to ask now, just wanting to see if the support is out there should we ever need it! Tia
Edit: we didn't haven't even made it through the night, he has pulled the first tube out already! I feel this is going to be a long road...
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My son had an NG tube for about 20 months after he was born. After that he had a mic-key button inserted directly into his stomach and we did the tube feeds through that until he was about 8. He spent 9 weeks in special care after he was born and only came home because I learned to insert the tubes. Once he was home the tube had to be changed weekly, although it often got done more frequently as he would hook a little finger around the tube near his nose and pull it out. He would then look at me, ever so proud of himself for getting rid of the nasty tube! Be prepared for a constant runny nose, due the irritation caused by the tube, which then softens the tape making it easier for little fingers to pull the tube out. I assume your little one is mobile so I do recommend rolling the tube up and taping it to the back of the shirt, leaving it loose enough that it doesn’t pull during movement. If you leave it loose it is more likely to get pulled out.
I don’t know of any support groups unfortunately, there was a lot happening after my son was born and by the time I was fully out of the haze he was nearly 1 and it was habit by then. In hindsight, I would have pushed for a mic-key button sooner if I had realised the tube feeds would continue past 6 months.
You don’t mention why the tube is needed, but my son was aspirating anything he had orally. Getting his tonsils and adenoids removed made all the difference for him. Once he had them removed we were able to slowly increase the oral feeds and top up through the tube until he was eating enough to maintain and increase his weight.
Good luck! It is a long, slow road, but so worth it! My son is now a happy, reasonably healthy 12 1/2 year old. It was tough at times, but I wouldn’t be without him.