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Posted 04 April 2008 - 09:38 AM
Hi I am new around here.
I was wondering if anyone has had experience with the nasogastric tube for their child? CJ had one for two weeks while in SCU when newborn and didnt seem to notice it much.
But he is now eleven months old and is having one put in again for at least a month, I looked it up on a search on the net and found that many adults who have had it spoke like it was the worse thing ever, so now I am really upset about how uncomfortable its going to be and how painfull the changing of the tube will be for him. The dr spoke like most babies and children dont seem to mind as much.
I wonder if children have a better tollerance of these kind of things?
Also if your child has gone home with a tube did you learn how to change it yourself....that sounds a bit scary to me, I think i might just return to the hospital to have it changed???
Any experience and thoughts would be very welcome.
Posted 04 April 2008 - 11:30 AM
My daughter had an NG tube from birth until nearly 18 months when she had a gastrostomy inserted. She didn't like having the tube, but once it is in they seem to cope OK with it. You may surprise yourself by being able to put the tube back in yourself - it is much easier to do it yourself than have to go off to the hospital every time they (or their siblings) pull it out.
The key for me was taping it very securely so that it rarely came out. If he only needs it for a month you *may* be able to get away with not changing it the whole time - depends how good he is at pulling it out.
Posted 04 April 2008 - 11:47 AM
My DD has had either a Oral-gastric tube or a NGT since birth, which is 12mths next week For her it is a normal thing to have and it doesn't really bother her. She does grumble when we put it in but once it is done she is off playing with her built-in play toy
did you learn how to change it yourself
Sure did. When she first came home she had and OGT due to a nasal blockage and we learnt pretty bloody quickly to put it in as she vomited it up after EVERY feed and she has 7 a day. I was shown twice how to put in her NGT and found it much easier than on OGT. You just put in up the nostril and the tube just follows the nasal passage to the stomach.
The main reason I wanted to learn is it is going to be in for a LONG time and I figgered it would be a hell of alot less work and hassle, than heading up to the hospital at all hours of the day with a 2.5yr old in tow
Feel free to pm me or post here with any questions as it is very daunting in the first few weeks, but it soon becomes part of your life and you become a lot less stressed about it.
Posted 04 April 2008 - 12:38 PM
Welcome to EB.
There's quite a few of us here that have used an NG tube for our kids at some stage.
They're quite easy to change, but you can get the long life tubes which can last over a month. Get some one to teach you how to check the position of the NG tube using a syringe of air and a stethascope, I found that easier than litmus paper.
The other thing I found easier was the long tube, as I could stand in front of him to put food in it, where as with the short tube I had to stand beside him and he would be turning his head all the time.
Den didn't have one for very long, once we found out that he couldn't swallow very well I organised for him to get a button put in.
You might get a few odd looks when you are out and about but you'll get used to that too.
Posted 04 April 2008 - 05:23 PM
Thank you so much for your quick replies. I really appreciate it.
We got some very encouraging news today, we had appointment with CJ's Dietician and the pediatrician(by conference call) and have all agreed that CJ can continue to go without the tube(for now). So i am really happy.
CJ is a poor feeder(although he loves food), I currently work extra hard with him giving him smaller feeds more often. THe pead was curious as to wether tube feeds over night might help him to grow a bit better/faster, but the Dietician believes that he is getting enough and that the tube might make him too full to want to eat breakfast, and create more problems than it would fix at this point.
Your replies have still been very helpful, as it is possible that at some point in the future CJ may need the tube, your replies have reassured me that we will be able to cope. and it wont be too painful for him. Its also good to have a better understanding of all these things.
So thank you very much.
Tan; Happy Birthday for your little one next week!
Posted 04 April 2008 - 10:35 PM
I've never posted here before but I was reading your posts and your situation seems so similar to mine that I had to say a few words.
My DS was also a poor feeder when he was younger - he loved food but couldn't seem to take in enough calories to gain enough weight. As well as the tube he had when he was a newborn in the NNU he had ng tubes put in at 9 and 13 months, both times for overnight feeds.
The tube he had in at 9 months stayed in for nearly two months and it never needed to be changed. The one at 13 months was a different story - he was a lot more active by that age and pulled the tube out by accident quite a few times. We took him up to the paed ward to have it replaced each time.
For my DS, having the tube put in was always quite traumatic. I don't think it was painful but he hated being held down. The nurses were always surprised by how badly he took it and I think most babies handle it a little better. Once it was in it definitely didn't seem to bother him at all. I agree with PP that the key is to make sure it's taped down well so that it is harder to be pulled out.
I'm really glad you got such good news in not having to take the NG path right now. If it is eventually something you need to do, my advice would be to pay a lot of attention to how you feel about it. As his parent, there is no one else who is more in tune with how he is coping than you are. It is very easy for the doctors and dietitians to focus on the grams and overlook the effect the treatment is having on you and your son's life.
THe pead was curious as to wether tube feeds over night might help him to grow a bit better/faster, but the Dietician believes that he is getting enough and that the tube might make him too full to want to eat breakfast, and create more problems than it would fix at this point.
That was definitely our experience. The overnight feeds worked well in terms of weight gain but caused some major problems with DS's eating which took the better part of a year to overcome. We would stop the feeds at 5am but up until about 11am he would be sick if any food or drink even went close to his mouth. With any luck your DS won't need a NG in the future but if he does this is worth keeping in mind.
I hope everything goes well for you and your DS. It sounds like you have a good medical team in your corner!
Best of luck
Posted 05 April 2008 - 04:32 PM
Peggy thank-you very much for taking the time to reply.
It does sound like our situations with our babies is similar, so its nice to hear how you have got through everything.
Its so hard to know with CJ if his very small height* and lack of growth and weight gain is to do with the chromosome anomaly and is completely normal for him, or whether something else is going on; eg lack of calories and nutrition. So the Dr.’s worry a lot about him.
*At eleven months Cameron measures in at the bottom line on the height and weight chart of a four month old.
Posted 05 April 2008 - 04:53 PM
Dis your dietician suggest using polyjoule at all? It is good for fattening kids up.
Posted 05 April 2008 - 05:11 PM
I was just thinking the same as Margaret for using Polyjoule to add extra calories to meals/food.
Cooper since 12months was always off the chart for weight due to cerebral palsy and high metabolism. WE have been usuing polyjoule most days since then just added to his weetbix in the morning...it has no taste really and dissolves readily. You can also add it to milk/water.
Cooper is now in the 10th percentile. 12.8kgs at 3.(we also used the NG tube at the start but then used a haberman bottle for a weak suck etc)
Posted 07 April 2008 - 04:36 PM
We are going to try polyjoule the dietician did suggest it, I have had to order it at our chemist as they dont keep it in stock.
I ment to write before Cameron Weighs 5.6kg. he doesnt look underweight at all, in fact i think he looks chubby, on the charts his height and weight would look fine if he WAS four months old and the dr's wouldn't be worried at all.
Posted 08 April 2008 - 01:40 PM
SHea has had OGT, NJT and NGT on and off, then a gastrostomy for past 3.5 years. I wrote some "Tube Feeding Tips" for a workshop that I can send anyone who PM's me an email address
We are still battling oral aversion issues possibly caused or made worse by tubes, so am glad you are not hurrying in to it. We also have trouble gettng Shea to eat after overnight feeds. Some hospitals (eg Westmead Kids) do not allow overnight feeds with an NGT due to the risks of aspiration, but I know heaps of others who do allow it.
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