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EN (NG tube)

Maya142

Maya142

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Staff member
M has lost a lot of weight in the last year (about 14 pounds). She drinks Peptamen, but can only manage about two a day since they make her so full. Her GI and nutritionist have determined that she is malnourished and needs to be getting more calories. So we have finally decided that she will do EN by NG tube which she has been resisting for about 8 months or so.

Because she is so malnourished, her GI wants her to be inpatient for a couple of days to make sure everything is working correctly. We'd previously been told this could be done outpatient and M is really not happy about being inpatient for 5-7 days. Is this standard? Was anyone else's kiddo admitted to do this?

Any tips, tricks to make the experience better for her? She's very nervous and not at all looking forward to it.
We will be trying Peptamen 1.5, I read on here that sometimes kids have trouble tolerating that?

Thanks!
 
Clash

Clash

C was inpatient but not due to EN being started. His weight got low before we could getbto the appt where the nurse was going to show us how to place it. Then joint pain flared so GI admitted him. He did decide to keep him a couple days after testing and placement of tube to see if all was going properly and get him to a certain discharge weight.
 
my little penguin

my little penguin

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Staff member
1.5 peptamen is very high calorie and sometimes a slow gut can't handle it.
If she is very malnourished they have to build up slowing and watch carefully otherwise other things can happen - hence the inpatient - you can't just start at a high rate or normal
Amount of formula .
:hug:

Regular peptamen is easier on the gut. The only difference is number of shakes put in .
So 1.5 would be 5 shakes vs regular 7 shakes .
If the plan is straight over night feeds then that may be why.
I would ask why the higher stuff since your pumping it in anyways and you know her system tolerates peptamen -normal .
 
Maya142

Maya142

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Staff member
Because she does not want to have to do it during the day:ybatty:

I'm not sure how many calories she will get but it's 75% EN and 25% (I think). I think they're just trying to get enough calories in. I will ask about the regular Peptamen, but unless she agrees to do it during the day, not sure she will have enough time to do 7 shakes or so at night.

She's a senior in HS this year and is already worrying about college apps, so I don't want to try to make her do something she doesn't want to (especially since she was already so against the ng tube!).
 
Jmrogers4

Jmrogers4

No advice since we did not do NG tube but it was really hard for its to do 8 shakes a day as we really had to schedule and as adamant add he was about not doing NG tube if we have to do EL again he wants NG tube so he doesn't have to worry about it. EL did male a tremendous difference as far as nourishment and weight gain, we were 80/20 and he quickly was back on the bmi growth charts. Hope it works wonders
 
Sascot

Sascot

My son had the NG tube for 9 weeks. He was admitted for one overnight to have it inserted and then teach me how to "feed" him. It wasn't pleasant going in but was quite quick. He felt uncomfortable for about 2 days and after that didn't really notice it. Hope it goes well if she ended up getting one
 
Maya142

Maya142

Moderator
Staff member
We want a really small one right? I remember someone saying an infant sized one?

I'm pretty sure M has completely fallen off the growth chart in terms of weight, so really hoping this will help. M is mostly worried about inserting it herself.

Thanks everyone!
 
Clash

Clash

Yes, C uses 6FR which is the infant size And you want it with stylet not without. The guidewire(stylet) makes a big difference or did for us on ease of insertion.
 
Maya142

Maya142

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Staff member
Thanks, will make sure to get the guidewire/stylet. Found a couple of good videos, so she isn't so worried anymore. M will be admitted on next Tuesday (if insurance cooperates).
So she's now 87lbs, I'm hoping she'll start gaining soon!
 
Twiggy930

Twiggy930

Location
Canada
My son did EEN via a NG tube that he inserted himself nightly for 6 weeks. He was 10 years old at the time. Our lovely GI nurses taught him how to insert the tube in about 1 hour. I was totally amazed. He used a 6 Fr sized tube with the guide wire removed. He used a numbing gel (the kind you rub on teething baby's gums) on the end of the tube to kind of numb his nose for the first little while. He found the trickiest part was finding the right spot at the back of the nose where the tube has to make a turn down to the back of the throat. I think that it is much easier for the person having to tube inserted to do the inserting themselves, even the first time, as it minimizes the blind pushing to find the right spot for the tube at the back of the nose. After about 5 days my son could literally insert the tube by himself in 12 seconds flat. We used a very slow rate with the pump at first and slowly, over the week, increased the rate.

I sincerely hope that your daughter has the same good experience with the NG tube that my son did.
 
Maya142

Maya142

Moderator
Staff member
Thanks Twiggy930 (I like the lidocaine gel idea!), M is determined to do it herself and is not so anxious anymore after watching some videos on youtube (thanks MLP!).

We were initially told M could do it outpatient in a 2 hour long appointment, but now since she's lost so much weight and is apparently "severely malnourished" (still in shock :eek2: about that - no one mentioned it before today!) she has to be inpatient.
 
Maya142

Maya142

Moderator
Staff member
So far so good! M's nurse inserted the NG tube today, and she tolerated it pretty well. The one thing she has been complaining about is that her nose and throat are very sore - so sore that she isn't really eating (even though she is allowed to).

The nurses keep assuring her that she will get used to it, and it's just because it's the first time. Did anyone else's kid have trouble with this?

Tomorrow she's going try inserting it herself. She is NOT looking forward to that, mostly because her nose hurts.
 
AZMOM

AZMOM

Moderator
Have her try the other side. They had told us to alternate but both times we've used the left, it's been painful. So out of 90+ days, only twice has she used the left. She says the right side is a better "tube side".

Claire drinks a lot with the tube in but says it feels weird to swallow food or pills so we generally don't make her.

Go, M, go!

J.
 
Clash

Clash

C uses the right side, he said it scraped to much and made his throat sore on the left. Also, without the stylet we had a struggle the first few times at home and that made his throat sore for a couple days. Are they using the numbing gel? C used it in the beginning and I think it helped. Later he just used some type of jelly they sent. Hugs and good luck tomorrow! Glad to hear insertion went well today!
 
Maya142

Maya142

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Staff member
We'll try the other side tomorrow. We did use some sort of gel, but I guess it didn't help much. Her nose is still really bothering her, her throat not so much.

She won't have it in for most of the day tomorrow, so she'll be able to eat (thankfully). The rate is really slow right now so she actually has had very few calories today -- seems funny that she's consuming fewer calories with the NG tube in!

Thank you everyone for all your suggestions and support!
 
Twiggy930

Twiggy930

Location
Canada
DS found the tube a bit bothersome for the first couple of nights. But his throat seemed to get used to it and the nose didn't get sore when he got good at inserting it, which happened VERY quickly. I really think that it will be gentler for her to do the inserting herself because then she will know when to stop pushing and how hard to push. When someone else does the inserting they have to guess at all of that. DS never ate with the tube in. He did switch nostrils every now and then. I don't remember if he had a favorite side.

I wonder if that numbing throat spray that people use when they have a sore throat would help. Maybe even to just spray it once the tube is already inserted. Never did it, just thought of it now.

Good luck tomorrow.
 
Sascot

Sascot

My son had a really sore nose and throat for 2 days after but then he kept his in, so got used to it. I hope it goes well for her doing it herself!
 
Farmwife

Farmwife

Sorry I haven't been around, major computer problems.:ymad:
My girl had sinus issues with her tube. I hope it gets easier.



:hug:
 
Maya142

Maya142

Moderator
Staff member
M was able to put the NG tube in by herself tonight :banana::banana:!!!

She was soooo relieved when she could do it, she had been dreading it all day. It's no longer sore, and she's really not bothered by it.

I think we're still stuck here for a day or two, but we're trying to see if we can get discharged early.
 
my little penguin

my little penguin

Moderator
Staff member
Yippee!!!
For no pain and getting it in.
Hope you get sprung soon.
It may depend on her feed rate .
Sometimes they want them up to a certain rate before they can go home .
Hugs
 
Maya142

Maya142

Moderator
Staff member
Two things:
How do people clean the tube? M is completely grossed out by it in the morning (so I will take this lovely job). Is just water ok? It seems kind of...unsanitary!

M also has diarrhea, probably for the Peptamen 1.5. We're hoping she'll adjust, but if she goes to the bathroom as many times today (10+ yesterday , I don't think they'll let us go home. Did anyone's kid have this problem from formula? Did it resolve?
 
my little penguin

my little penguin

Moderator
Staff member
Liquid in = liquid out.
When DS was on peptamen only EEN no food he had pure liquid d the entire time.
That said it was only a normal amount 1-2 BM a day maybe 3 tops.
 
Tesscorm

Tesscorm

Moderator
Staff member
I've been away, so sorry I haven't posted sooner!

So glad she was able to insert the tube herself!! :D How is she doing now? It's been a few days. I hope it's continuing to go smoothly.

And, yes, S did find the sensation of the tube bothersome (but not painful) at the beginning. And, he also only used one side - his left side. He had lots of trouble trying to insert on the right so just stuck to the left side. He did it for two years, always on the left and this didn't cause any issues.

Let me know if you have any other questions. :)
 
Tesscorm

Tesscorm

Moderator
Staff member
Just saw last couple of posts - S also had d the entire time he did exclusive EN. But, as MLP said, only 2-3 times per day and no real urgency concerns.
 
Maya142

Maya142

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Staff member
M is doing well! She's getting pretty good at inserting the tube.

The diarrhea is a concern, she's still going 8-10 times a day (pretty urgent sometimes), so I'm going to talk to her nutritionist and GI about maybe going back to Peptamen 1.0. The issue is that we can't get the rate above 80ml/hour or she gets really nauseous, so she'll have to be hooked up to the tube a LOT longer if we do that.

We're eventually going to try increasing the rate really slowly by 5ml every few days and will see if that helps, but waiting for the diarrhea and heartburn to settle.

The only other issue is that she moves a lot at night because her joints get painful if she lies on one side for more than a couple hours. The ng tube became disconnected from the line that goes to the pump, and all the Peptamen dripped on to the floor (this happened in the hospital so I didn't have to clean it up lol which was nice)! We've tied taping it but does anyone have any other tips?
 
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Farmwife

Farmwife

Theirs connectors that can join the feeding tube and the formula tube. It will stop the night time leaks. Ill try to find the web site. Also ask the nurses as they might have some.
grace took 5 months to get up to full feeds because she was so malnourished. Just go slow.
 
Maya142

Maya142

Moderator
Staff member
Farmwife, the r key on keyboard doesn't work :ybatty:! I have to copy and paste! I couldn't help but think of you :lol:

It's diving me cazy (see what happens?!) :yrolleyes:.

And thank you, will look into a connector!
 
Tesscorm

Tesscorm

Moderator
Staff member
Yes, they used an extension on the tubing while S was in the hospital. Is there anyway you can move the stand closer or even lower the pump so that it's at bed height (will give a bit more length for the tube)?

I clipped (used a small hair clip) the NG tube to the shoulder of the t-shirt S would sleep in - but I'm not sure that this will help you?? The extension would probably be better.

Also, try different formulas - as flavour isn't an issue with the tube, there might be one easier for her to tolerate. S used Tolerex (Nestle).
 
Clash

Clash

C's pump slides up and down on the iv pole and we have the pole right by the bed. Also we have connectors extension thingies for when he needs to lay on his other side due to back pain. I hope they find an answer for the D though! HUGS!
 
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Maya142

Maya142

Moderator
Staff member
Just wanted to update - M has gained 2 pounds! It's not a lot, but at least it's something, and considering she's still going to the bathroom 6-8 times day, I'm amazed she gained anything at all.

We switched to Peptamen 1.0 a couple days ago. The nausea and heartburn immediately went away. Now we just have to up the rate so we can get 1000 calories into her at night.

She's quite good at putting the tube in though for some reason has trouble with doing it on her left side (right is fine though?!).
 
Tesscorm

Tesscorm

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Staff member
Great news! Don't worry about using one side only - S could only use his left side, whenever he tried the right side, it would take a long time and he'd end up sore and just frustrated. He used only his left side for almost two years with no problem. :)
 
my little penguin

my little penguin

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Staff member
Woohoo on weight gain.
Can she try to putting the tube on the first thing when she gets home from school vs bedtime at a higher rate ?
 
Maya142

Maya142

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Staff member
She completely refuses - but I'm working on her! However, it did take us about a year to convince her to even try the NG tube so not sure I'll get anywhere any time soon. Teenagers...:ybatty:

80ml/hr is not a very high rate though, so maybe she will tolerate a higher one if we go up really slowly.
 
Tesscorm

Tesscorm

Moderator
Staff member
What happens if you increase the rate once she's asleep? Would she be able to sleep through any nausea?

As for heartburn, can you elevate her head somehow? An extra pillow or something to incline her mattress so she's not lying completely flat? My understanding is that the tube forces the flap between the esophagus and stomach to stay open a bit and allows acid to escape. A bit of elevation may help alleviate that. S had to take nexium while he was using the NG tube because of heartburn. When S was on supplemental only, he used the NG tube 5 nights a week; if he skipped the nexium, he'd have no heartburn the mornings he didn't use the NG tube, however, always had heartburn if he had used the tube with no nexium.
 
Maya142

Maya142

Moderator
Staff member
We tried that at hospital - she woke up within 15 minutes and got very nauseous (needed Zofran). She also had a lot of heartburn.

Elevating her head doesn't work because her neck hurts because of AS. She is supposed to sleep completely flat or on a very thin pillow. We did try elevating her head but it was too painful and uncomfortable :(

M is already on Prevacid twice a day (before breakfast and dinner) and Pepcid (the prescription strength, not the OTC kind) at night. She was given Maalox or something like that at the hospital. She can take that if she really needs it but the heartburn is much much better since switching to Peptamen 1.0.
 
L

Liquid Bacon

Catherine said:
If can't elevate her head. How about the whole bed?
Click to expand...
That's what I did when I was doing the tube feeding. We didn't have a lot of money back then (well, still don't!) so I had wooden blocks under the two head-side legs of my bed. I was supposed to do 8 cans of Boost during the night and drink 4 during the day, but after a while I couldn't even stand the smell of them and ended up pumping in most of it at night with the speed up high.

I also couldn't use one side of my nose but it never gave me any issues after over a year of tube feeding.
 
Maya142

Maya142

Moderator
Staff member
That's a good idea, I hadn't thought of that! M's heartburn is a lot better though, so hopefully we won't need to do that.

She has been using her right nostril but it started bleeding yesterday, so now she's doing the left. The diarrhea is still the biggest issue - today she couldn't get to the bathroom in time. Her nutritionist says her body will get used to it...but when?! It's been just over 2 weeks.
 
H

happy

Maya142, Perhaps she is intolerant to some of the ingredients of the formula. It could be because of the dairy ingredients (whey) in the Peptamen formula. I used VivonexPlus because of this problem.
 
Maya142

Maya142

Moderator
Staff member
We did think about that but she has been drinking Peptamen Jr for over a year with no problem. However, she only drank 2 a day and is now getting 4 at night. I did ask her nutritionist who wants us to wait for a while longer to see if she gets used to it. But I'll keep VivonexPlus in mind!
 
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