*UPDATE* NG/G-Tube questions

[Mom2Miracles]

*UPDATE*

My daughter is being admitted to the hospital tomorrow morning (Tuesday) to have an NG-tube placed. She'll be in the hospital for at least 2-3 days, could be longer depending on how things go. She'll have 12 hour continuous night feeds (and possibly bolus feeds during the day), as well as some of her meds given 8 times a day through the tubing (2 of her meds are each given 4 times a day). The rest of her meds will be given orally. As long as we see an improvement (there is a chance the NG-tube won't do what its supposed to do), she'll have a G-tube placed in about 2 months. We are very nervous (I am literally feeling sick to my stomach right now) going in to this, but we know its the best thing for her.


I am new to this board, so I appologize if I am asking something that has been asked over and over.

Does anyone have a child who had an NG or G-Tube placed when they were older then baby/toddler? We are facing this with our daughter who will be 4 in June, and i'm terrified. We had a long talk with her Paed about it today, and while we know if this does happen its for the best, but it still scares us. We worry about how our daughter will handle it, how others will look at her or treat her. She would have an NG-tube at first, for probably 2-3 months (just to see how her body handles it and if it does what its supposed to do, etc). If all goes well, it will be replaced with the G-Tube. She would be in the hospital for a few days when the NG-tube is placed, but that in itself isn't anything new. We'll be finding out next week what the plan is, and i'm nervous. We trust her Paed and Specialists and know they have our daughters best interest at heart, which is reassuring. Anyways, just looking for any information/personal stories about all of this.

[anj_rn]

My daughter got hers at 4 months, but I am a pedi nurse, so I have some exp.

The g tube is a fairly simple procedure, she will have some pain at the insertion site for a few days, the hard thing is keeping them from pulling on it. Usually after about a month, they will switch the tube for a low profile button. Once that happens, no one will really know that it is there unless she is connected to a pump.

The NG tube is another story. They tube comes out her nose and is taped to her face. Many children find this very uncomfortable and pull it out or tug on it. In addition, it is impossible to hide.

[Mom2Miracles]

Thanks. I'm sorry you are dealing with this as well. Did she have the NG-tube first, or go straight to the G-tube? Our daughter would have the NG-tube first, for a few months. Then switch to the G-tube if the NG-tube does what we are hoping it will. If you don't mind me asking, why does your daughter have the feeding tube?

[2boyzmama]

Connor doesn't have a tube...although we've been walking the line of needing one his whole life, in fact I just weighed him tonight because he's sick again and looking *awfully* skinny to me (and he's already a skinny-mini).

BUT...I wanted to comment on how others might treat her. Before Connor, I didn't know a single child with a tube (long ago when I was a child, I remember my mom doing respite care for two kids on tubes, but that was literally my only exposure). However, once Connor was born, and my eyes were opened to the special needs community, suddenly I'm seeing kids with tubes everywhere! At our Deaf Community events, there are two kids with ng-tubes, and another two that have mic-key buttons (I wouldn't have known if I hadn't chatted with the parents). At the mall the other day I saw a little guy at the play place with a backpack on that I recognized to be a pump bag. At Connor's therapy there are several kids with tubes. At LaLeche League a few months ago a mom showed up with a baby that had an ng-tube.

So they ARE out there. I never noticed before! My kids don't even look twice at them anymore, they are used to seeing them after all the time we've spent in/at the hospital. My 5 year old recently asked if pudding can go through a tube

[MotherWhimsey]

My son was a baby when he got his tube too, so no personal experience with an older kid with an NG. We did start out with the NG though. One big benefit I can see to it being an older child, if they're able to understand not to pull it out, you might never have to put it back in. But even if you do, it's really not hard at all. I have a video of me putting one in ds when he was a baby if you want a link.

G tubes are much easier, so it'll be a nice change there. But I think if she can understand not to pull it out, you can make it a few months with an NG no problem. Just prepare her for questions, cause we get asked a LOT of questions.

[AndVeeGeeMakes3]

Another mom here with a kiddo whose g-tube was placed as an infant, but, she's 4.5 years old now, so I can speak to the "how others will treat her" question. VeeGee is "on the tube" a lot, and gets hooked up at school, so everyone knows about hers. Also, she's so thin that you can see it through her shirt. So, kids do notice it. And they ask her what it is. I've just told her to say it's how she eats (she doesn't speak well, so I often end up translating that for them). Almost 100% of the time the asker will just go back to whatever it was they were doing before they asked (playing on the playground, swimming, whatever). The other small percentage of kids who don't drop it just ask follow up questions. I've never had anyone act strangely toward her because of the tube (far more react negatively to her speech). There will be curious adults too, but that's usually (usually) easier to deal with. Only a few times have I had to watch closely to make sure a (usually younger) child doesn't pull on it or mess with it in some way. We had this same issue when she had a trach. Some kids just want to touch. I don't allow that. Nor will VeeGee (she'll actually smack 'em before they get too close to it).

Now, as to how your daughter will react, you probably know better than any of us could tell you. If you explain what is going to happen and why, she'll be okay. VeeGee is extremely protective of her mic-key button. She doesn't like even me to touch it. Partly that's SPD, but mostly, I think it's a mixture of physical discomfort and a sort of sense of personal space.

I hope you guys have a smooth transition to the ng and, then, the g tube. Don't hesitate to come back and ask questions. Even if we've all talked about it a gazillion times, we don't mind answering your questions.

[anj_rn]

Originally Posted by Mom2Miracles

Thanks. I'm sorry you are dealing with this as well. Did she have the NG-tube first, or go straight to the G-tube? Our daughter would have the NG-tube first, for a few months. Then switch to the G-tube if the NG-tube does what we are hoping it will. If you don't mind me asking, why does your daughter have the feeding tube?

My DD had a near SIDS event at 4 months of age. Due to the time with CPR, she has a profound anoxic brain injury and she lost her ability to suck & swallow. She had an NG in the hospital for 3 weeks, then she had surgery for g-tube and trach placement. 1 month later we switched the tube out for a g-button. People ask us about the trach & g-tube all the time. My almost 4 son explains his baby sister is special and breathes through her trach instead of her nose and eats through he tube instead of her mouth. He loved helping me blend up her food for her feeds and frequently asks to if we can give something to baby sister (we blended some cupcake for her birthday).

[isisreturning]

My DD got an NG tube at 8 months old (she was on chemo for brain cancer). We kept thinking she'd start eating again, but she didn't, so finally when she was 2 1/4 years old, we switched to the G-tube. We should have done that much sooner. G-tube is great and easy to deal with and of course much less noticeable. We've done the same thing as other posters when folks have asked us questions about either tube - "this is how she gets her food. it goes through her tube instead of her mouth." if they ask more, i explain that she had some very strong medicines that made her sick and made her not want to eat. then i show how plump and healthy she looks and say how great it is that she can get good nutritious food, just like everyone else. My DD has some communication delays and isn't self-conscious at all, so other people's reactions don't bother her. Also, be prepared that the NG tube may come out a time or two - if so, you can take her to any emergency department to have it reinserted, or, many parents learn how to do it themselves (we put our DD's NG-tube back in many, many, many times. Not fun but you get through it and we got better at knowing how to do it just right FOR HER than any medical professional could).

Most of all, I am replying to convey my hope that the feeding tube does what you need it to do!

[JSerene]

My dd got an NG tube last November at 4 1/2 years old. She had it for 6 weeks, then had a PEG tube for 3 months, then finally got her Mic-key button last week (G-tube).

First, a few things I can share about the NG tube. Children and people in general responded very kindly to the tube. Kids were especially curious and would ask questions and we explained. It was fine.

We kept her away from baby's and toddlers because it's too easy to hook a finger on the tube and pull it out.

The hospital told us to tape the tube to the back of her shirt and this did not work well at all. Our dd found her own solution and looped it around her neck. It worked great and we kept it that way for the rest of the 6 weeks.

Skin breakdown on her face was a significant problem for us. That, combined with her nose being very tender, made tape changes a very big deal with lots of tears. We had a bag of beanie babies from the goodwill on hand as incentive. It was terrible.

Having the NG tube placed was very traumatic. They gave her a sedation medicine called versed and it would have gone okay if the nurse could have gotten it down the first time. Unfortunately, she didn't...nor did they get it down on the second or third times. Eventually, she was brought to the peds sedation unit and give IV sedation and it was placed under x-ray. That worked much better. We were warned that most kids pull out their tubes by accident and needs it replaced. We never did. My dd never wanted to have that done again and was very careful of her tube. (it's easy IMO to place NG's on babies, I'm a nurse and have done it many many times...not so with young children - it hurts).

Placement of the PEG tube was much less traumatic because it was done under general anesthesia, though the pain was much greater after the procedure. I had to advocate hard to get her anything stronger than tylenol. If I had to do over again, I would ask about pain management ahead of time instead of when she was in acute pain, needing somethign immediately, and not having it available. She wasn't up to walking around much until her third day post-op. Infection is common and she also got one, so have some bacitracin on hand.

Placement of the mic-key was more difficult than we had been told. We were told it was very quick and would not hurt. They pulled out the PEG tube, put in a measuring tube, then put in the mic-key. It hurt. Usually it's done in the office with no meds but we insisted on sedation. Even with mild sedation it was still difficult. She was sore for a few days afterward. I don't know if this step in the process applies to you. I have since been told this part is usually skipped and they go straight to the mic-key. I don't know why they did this to my dd since we knew we needed something long term.

We got the advice on this board to make sure you have something (like an extra mic-key button or a foley catheter) to put in the stoma in case the G-tube gets pulled out. The hole can close in a few hours and you'll need to keep it open while your waiting in the ED.

My dd has eosinophilic esophagitis and cannot eat any food. Why does your little one need a feeding tube?

Good luck. I sincerely hope your experience is better than mine.

[Liba613]

When my oldest daughter's gastro was pushing to do tube placements she was five. The GI was adamant that at that age they go straight to a g tube since the NG tube is hard socially, and uncomfortable enough that some kids who didn't have feeding issues develop them. He scheduled tube surgery and we got another opinion and switched doctors. For her it was not the right decision. It would have masked me daughter's issues instead of getting to the root of the problem.

My my youngest has a tube that was placed when he was an infant. For him it was the right decision and it has saved his life and kept his development much more typical. Right now he gets most of his nutrition overnight and is eating the meager amount he is capable of during the day. He is developing and growing and the tube is a blessing. He is three and a half and even with a well established tube site tube changes, or even checking the water, is traumatic. I check the water when he is sleeping but can't do tube changes that way.

[Mom2Miracles]

Wow, thank you everyone for your personal stories. It helps to hear what others have experienced and what we may face at some point.

The main reason it's being suggested that we do the NG-tube first is because we want to see if it will work for her. I agree with that as I don't want her undergoing the procedure for a G-tube if it's pointless. The pain/discomfort for a few days, a small scar, etc. Our daughter has issues with her Pancreas, it's insufficient. Her body cannot absorb fats, proteins, carbs or nutrients so we have to suppliment her body with Enzymes to absorb everything since her body doesn't produce Enzymes naturally like ours does. BUT, she is on an incredibly hight dose of Enzymes (like an adults dose) and for whatever reason, it's not working - at least for the last 2 months it doesn't seem to be working as effectively as before. She is loosing weight again, weight she doesn't have to loose. Her Drs are looking at giving her predigested formula that is high in calorie in the hopes that if her body doesn't have to work to break it down to absorb it, she might gain weight.This would be supplimental though to her regular eating. Also, she is on other meds to help keep her digestive track moving and to keep her bowels moving and since she is barely drinking the last few weeks (which we aren't sure why, but thinking she is too backed up therefore drinking more is difficult for her), she isn't getting enough in. And since her liquid intake has gone down she is now refusing her high calorie formula - argh. So the NG-tube would be to give her the new formula (apparently they smell and taste so bad that she would never take it), and to get the meds in to her that she isn't getting from her lack of fluid intake. I mean, if she can't maintain her weight (or gain steadily for that matter), then how do we know the NG/G-tube will work? We are hesitant in any way about her getting it, but if her Drs truly feel that she needs it, we'll do it. It's just scary and leaves us feeling very helpless. I do want life to be less stressful, we don't like worrying about what she is or isn't drinking, worrying about if she is getting enough meds, etc. She is still undergoing testing with Specialists to find out why the Enzymes aren't always working, they are concerned about bigger issues. The are also thinking that its possible that her gut isn't absorbing properly either. Your Pancreas absorbs some things and your gut absorbs others. So we know already (through testing) that her Pancreas isn't working like it should be, but its possible her gut isn't either. She also has high SED rate levels, which indicates inflamation in her body, but doesn't specify what is wrong. That is also concerning them, and she'll have the levels re-tested in a few months. Depending on the results, more testing for that. At this point though, we need to get her weight under control, stop her body from loosing weight, so we can focus on the bigger picture.

Our daughter also carries one of the rare gene mutations for CF, but does not have full blown CF. Its weird because she holds ALL of the GI traits of a CF patient (Pancreas issues, digestive issues, bowels issues - blow out, bulky stools, VERY sour smelling), but she doesn't have any of the lung issues associated with it. Which I guess is why she has done well on the Enzymes in the past. She goes through spurts where she gains (though VERY slowly) and times when she doesn't gain. Its been probably 2 years since she went through a phase of weight loss though. Her Paed told us the other day, that many of her CF patients have G-Tubes, so its not surprising that she may need one.

She was on a special formula, which was almost 400 calories for 8oz, which was great. But, she won't take it now. The new formula's they are talking about her starting are pre-digested so her body wouldn't have to work at taking what it needs from the food, and her body wouldn't have to break it down. The hope is that her body would absorb what it needs and help her gain weight. The issue though is they they taste SO bad that no one would ever drink it. Her paed said, imagine re-eating something your body had already digested, and how disguting even the thought of that is, let alone actually doing it. Our daughter is allergic to milk as well, so a lot of the healthy fatty foods aren't options, or things like protein shakes, etc

[pixiekisses]

I just wanted to say good luck mostly. Our little miss cotton ball button was 2.5 yo. when she got her G-tube. She had a NG just days before it. But in her case it was just something she had to have, no doubt about it. So that's why we did the G-tube asap. Now she has a GJ-tube.
We thought she had CF too, for years, now we're not sure though, since her syndrome might explain things.
Not that it matters really, she has had CF treatment for years and it's done her good.
She handled the G-tube fine even at that age, with lots of explaining of why she had to have it, what was up with her body etc. etc. (She's gifted, so at 2.5 her understanding was a lot higher than other 2.5 yo.)
G/GJ-tubes are so, so much easier than NG's, so you'll probably be happier with that if it works for her. And if it does, I wouldn't hesitate for long to put in the G-tube, NG's are kinda more invasive in a way, and can lead to some kids refusing to eat and stuff. More uncomfortable.

Anywho, that was a long good luck.
I remember how it was though, when you put your child on the operation table, it's not with a light heart.
s to you.

[hannahgrace]

My little guy had a G-tube placed when he was 7 mo. old and then a G-J placed at 9 mo. old because of multiple aspirations. I don't have much advice, but it is much much easier to do then how it looks. The stuff looks scary, but I like to think of his tube feedings like filling my car up with gas. When I make things less medical, it seems to go over easier for me. I explain his tube feedings like that to everyone and it seems to make them more comfortable learning how to care for his tube. My five year old can even get his feeds started now!

[JSerene]

[QUOTE=Mom2Miracles;15280927]
(apparently they smell and taste so bad that she would never take it)

Yes to this. My dd is on neocate, an elemental formula. She has no problem eating and drinking and we tried to get her to take it by mouth, but it's awful. I finally tried some and then felt bad for ever suggesting she drink it.

[Mom2Miracles]

My daughter was on Allimentum as a baby and that was awful. Apparently the new stuff (I know Neocate was one of the ones mentioned) is even worse. Allimentum was awful, so I can only imagine what the other stuff is like. Ick.

[my3peanuts]

My son just had a g tube placed less than 3 weeks ago. He will be 4 in August. It's not been nearly as bad as I was invisioning. He is developmentally delayed and doesn't understand explanations so it wasn't something we could prepare him for. He's done well and doesn't mess with it.

[Mom2Miracles]

Thanks my3peanuts. I'm glad everything is going well with your son.

[JSerene]

[QUOTE=Mom2Miracles;15275820]*UPDATE*

My daughter is being admitted to the hospital tomorrow morning (Tuesday) to have an NG-tube placed. She'll be in the hospital for at least 2-3 days, could be longer depending on how things go.

Good luck. I hope all is well for you and your family. Let us all know how it goes.