Hi

Elli finally went on an ng tube last week. I have to admit I'm very relieved to know that she's getting adequate nutrition and more importantly fluids now.

I was wondering what the best sleeping positions are, what are the dangers (ie can she strangle herself on the tube) and is it normal to have vomiting in the morning after the flush?

Thanks

Lizzie

Just make sure that she is propped up the best you can. There is always the possibility of it wrapping around their necks while they sleep. If you run the tube behind the back of her neck and down through the back of her clothes it should help make it stay away from her neck...it will be more likely to wrap around her belly or legs then.

The barfing after flushing is something Shae would do frequently, and she still does sometimes actually. Flush very slowly, very slowly. Also, if you wait 5 minutes or so after shutting off the feeds to flush the tube (and do it slowly) it may help with the vomiting after the flush.

I always keep Sam elevated during feeds. We have a g-tube now. When he had a NGtube our biggest problem was that he pulled it every chance he got.
I never had a problem with him vomiting at all once we started tube feedings.I always flushed slowly and did not flush with much water, maybe 5cc, just enough to rinse the tube out. I flush the bag seperatly, is that what you do????

I am glad to hear that she is doing better on the ngtube. I have to agree when Brandon had his in we put it behind his back and taped it to his pjs or we also ran it through his clothing. We never had a problem with it chocking him at night. I also had him elavated during feeds. I do wish you luck and hope that things improve quickly.


Melanie

We looped up the tube and safety pinned it to Daniel's shoulder (the shoulder of his shirt, that is). Daniel seemed to vomit all the time with the NG tube, and sometimes he even vomited it up. But our biggest problem was just the constant retaping. The tube made his nose run, which made the tape come off, so we'd have to fix it, which made him cry furiously, which made his nose run more.....

Hi

I am running the tube through the arm hole of her sleeping bag now. Haven't propped her up as it seems to make the reflux worse for some reason.

I'm flushing her feed in the morning three hrs after it finishes, but when I offer breakfast (four hrs after the feed finishes) she vomits immediately. I'm not too worried as she vomits about 3 oz, but gets 18oz overnight. Not a bad trade off.

We also have a sticking problem. Her nose runs a lot and she sweats when we pass the tube, so I just redress the tube every couple of days.

I'm getting wet nappies like I've never seen before and two dirty nappies a day (used to be one every three days sometimes), so I assume she's getting plenty of nutrition now. She's cut back a bit on the solid food, but that's to be expected.

I just hope it works, she's 2 pounds off the bottom of the weight chart now, and 10th centile for length. I hope they don't take her of the ng too soon. She seems to have so much more energy now, and is sleeping much less in the day, but right through the night for 12 hrs. I don't know myself!!!

Lizzie

Sounds like things are going pretty well then. Is the plan to keep her on the NG until she puts on some good weight?

They hope to kick start her digestive tract and get her used to having food in her stomach so that when she comes off the tube she might be hungry and start eating.

Personally I think that she'll end up being on it for a while, but I'm happy to be wrong! If we can just get her back on the weight chart that would be great.

I feel so relived at the moment, not worrying all the time about her nutritional needs, whether I'm doing something wrong and when she'll eat something...today...tomorrow???

I know that a lot of parents are really concerned about the ng, am I wrong to feel good about it?

I think you feel the same way about the NG as I do about Daniel's G tube -- relief, and confidence that he's getting what he needs. Our current challenge is to get D to start eating orally now, too. He chews and spits out food, but he's trying lots of different things and willingly going to the table.

Did you doctor give you a limit for how long you'd use the NG tube? We used ours for months on end, but later I found out from a few doctors and therapists that they don't like to see a child using it for more than four to six weeks.

They gave us 6 wks as the max.... but we can still use it on days we need it per the GI. Some days when she only takes 6-8 oz of formula I tube her just so I know she gets something in her.

We weren't given any idea. If she doesn't start eating I don't see what else they can doo. Maybe give her a break and then start again?

We were told that if she has a bad day we can give top up feeds during the day. I asked what constituted a bad day. The amount of food was equal to a great day for Elli. What do you do???

She put on a pound in week after the first week on the ng, so I'm really pleased with it.

So far, so good

Hi Lizzie

Great on the weight gain! Keep us posted how Elli does. I am so happy for you for the weight gain. It is so nice to have peace of mind for awhile that Elli is getting enough nutritionally.

Shae-Lynne was put on the ng temporary...it lasted a year. But I don't that a child should be on it that long b/c it can't irritate the nose and sometimes make reflux worse b/c it keeps the LES open?

Did you read up under feeding/nutrition to the left.

Best wishes
Jean

They gave us 6 wks as the max.... but we can still use it on days we need it per the GI. Some days when she only takes 6-8 oz of formula I tube her just so I know she gets something in her.

We're finally starting to lighten up to the idea of the NG tube. I admit I envy everyone's statements about the relief and confidence that their child is getting enough fluids and nutrition!! :wink:

Is the tube difficult to insert on your own? Can you just use the tube at night and then take if off during the day? Or is it a pain to your child to reinsert everyday? Does anyone know why 6 weeks is the general limit? Are there any questions I should ask the GI before we insert the tube?

Any other general information on NG tubes would be helpful!! Hoping there is a light at the end of the tunnel.

Is the tube difficult to insert on your own? Can you just use the tube at night and then take if off during the day? Or is it a pain to your child to reinsert everyday? Does anyone know why 6 weeks is the general limit? Are there any questions I should ask the GI before we insert the tube?

We were trained by home health care to put the tube in. It really wasn't hard -- the toughest part was putting Daniel through it. We left it in all the time (though we often had to retape it as D's nose ran and loosened the tape, so we had to recheck the placement, too), but Amy does/used to put the tube in Alexys every night.

The NG tube is considered temporary because it can actually cause food aversion. Having something down the back of their throat can cause irritation and gagging (D threw up more with the NG tube), and we were also told as the child grows accustomed to it, it can cause a "dead" spot in their throat (meaning they don't have much feeling there) and then they panic when eating orally and food hits that spot. I hope that makes sense.

Evenutally D got a G tube and I've found it's much easier in our situation. But he wasn't taking anything (solids, purees, liquid) and it didn't seem like that was going to change anytime soon.

Yes as Becky said we put it in every night (still about 3 nights a week unfortunately) but i dont recommend doing this unless you have too. It causes her a lot of irritation this way, and is hard to put her through on a daily basis. We just didnt have any other choice because she rips it out if we leave it in, and we only use it for night feeds. We also run hers through the arm of her jammies and pin it there so she cant rip it out while shes sleeping. We were also shown by a home health nurse how to put it in and take it out.