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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Can't insert NG tube in 13yo - Need advice ASAP


02-11-2016, 01:33 AM   #1
Sophs mom
 
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Can't insert NG tube in 13yo - Need advice ASAP

Hi - We're new to the forum and could really use some help. My 13 year old daughter was diagnosed with Crohn's disease via endoscopy & colonoscopy with biopsies.

She was admitted to the hospital last Friday for EN via NG tube, after a failed attempt at drinking OTC shakes at home. The plan was to insert the NG tube each evening, use a pump to give her 2000ml of Peptamen 1.0 over a 12 hour period, and for her to remove the tube every morning before she went to school. She would also have minimal calories from clear liquid/broth/candies.

While in the hospital, the nurses inserted the NG tube the first 2 times and she was able to do it 2 more times before we were discharged. Once she was discharged, she was able to insert the tube the last 2 evenings at home without a problem. However, we ran into a lot of problems tonight and after 2 unsuccessful tries I'm not sure what to do.

So here are my questions/dilemas:

1. We were taught to listen for a swoosh sound using a stethoscope to ensure proper tube placement. Dr. Google said this was the WRONG way to do it - but this is how all the nurses did it too - no x-rays, no acid tests, etc. Usually hear bubbling sounds like blowing through a straw into a glass of milk, but tonight heard nothing after each attempt.

2. We weren't told what kind of lubricating jelly to use so I bought Vaseline (petroleum jelly.) Again Dr. Google said this was WRONG because it wasn't water soluble and aspirating it was dangerous.

3. After her 2nd attempt inserting the tube tonight, my daughter asked me to check the back of her throat to see if I could see the tube, as she was able to see it in the mirror at the hospital. It definitely wasn't there. She inserts approx. 21" of the 36" tube. Where did it go? Could it go up into her sinuses? She had her head bent down into her chest and she was drinking water like she was taught at the hospital. FYI - at this point she was very upset and crying really hard so we didn't try again.

After the 2nd attempt, I tried sucking up stomach acid (even though we weren't taught this method and I didn't really know what I was doing. 2 of 8??? nurses just randomly mentioned it but said it wasn't the best choice.) I could barely pull the plunger back to 20ml on the huge syringe from the medical company (60 mL total). And what little fluid came through looked like clear snot/saliva.

I don't want to give up on EN but I don't know what to do and I no longer feel safe with what we were taught thanks to Dr. Google. Also, being that she's 13 and her height and weight both dropped 50/25 percentile points in the last 12-18 months I REALLY don't want to give up. Her window of puberty & growth is very quickly closing and she's barely over 5' tall. (She use to be 75th/50th percentile for height & growth all of her life.)

She's also on 9mg of Entocort daily, starting 10 days ago.

Any suggestions, advice, etc. would be GREATLY appreciated! Now that we've done 6 days of EN I don't want it to be for nothing by putting her back on solid food.

Thanks (& sorry this is so long)!!!
Soph's mom
02-11-2016, 08:35 AM   #2
Clash
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I was in a tizzy the first week my son did EN due to some similar issues.

One thing that really helped was using the ng tube with stylet which are like guide wires. Is she using those? We also found that using the smaller tube 6FR was the best.

We had the acid strips but didn't use them long at all because once we started using the tube station with stylers it just wasn't a problem.

If I remember correctly C's tube would fold up when he tried to place it. We tried refrigeration but still when we pulled it you could tell at some point it started folding possibly when trying to get past the soft palette. The tube with stylet stopped this for us.

We did use a jelly but outs came in small packets and we're provided by the medical company we ordered the tube station and formula from.

I'm sure others will be along with their experience as well and I hope the issues with insertion are resolved soon.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
02-11-2016, 11:19 AM   #3
Sophs mom
 
Join Date: Jan 2016
Location: Chicago, Illinois

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Thanks Clash. My daughter is using a 5 French but it doesn't have a stylet or wire in it. I'll see if the medical supplier can send a few to try. In the mean time I'll try sticking one in the fridge.

I also bought some surgical lubricating jelly this morning. That seems to work much better than vaseline.

Thanks for your help!!!
02-11-2016, 11:38 AM   #4
Clash
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We struggled until we got the stylet type and it made it so simple. The stylet is inserted in side the tube and when the tube is placed the stylet just slides out.

It literally made placement under a minute.
02-11-2016, 03:29 PM   #5
Maya142
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Sending hugs! It took about two weeks before my daughter got really good at inserting the tube.

We did find that lubricating jelly helps. We were talk to check the pH to make sure it was in the right place. It's quite easy - you just use a syringe to pull back stomach contents. You have to make sure you're getting stomach contents though and if she's just drunk some water to get the tube down, it's more likely you're getting that water. Wait 5 minutes and try again if you seem to be getting water. You can get pH strips online or ask your supplier (whoever gives you tube supplies). We weren't taught the stethoscope method, so I can't advise you on that.

My daughter initially liked to use a mirror so she could see what she was doing. We also had a stylet in our tube, that made it more rigid and easier to get down. She had a 6Fr tube, so very small and thin like your daughter. She drank water as it was going down her throat. I would hold a glass of water with a straw at first and eventually she learned to do it with one hand so she could hold her own glass of water.

You should definitely be able to see it in her throat once it has gone down. It can go down the windpipe - trachea - so it's important to make sure it's in the right place. That is rare though - apparently most kids will start coughing immediately if that happens. It's more likely it got stuck before it got down to her throat.

Feeding tube awareness has a lot of good info and some videos:http://www.feedingtubeawareness.org/

You can also find videos to show your daughter on Youtube.

You can get small syringes (5mL or 10 mL) on Amazon. That might make it easier to give meds through the tube and flush it. We rarely used the 60 mL syringes because they were just unnecessary. The Parent's Guide PDF on the Feeding Tube Awareness site has info about syringes.

Finally, you can look at Tubie Friends: http://www.tubiefriends.com/
And Kids Hope Chest: http://www.kidshopechest.com/feeding...-stickers.aspx

Tubie Friends makes stuffed toys for kids with tubes. My daughter has one which has a GJ tube just like she has! She used to have an NG tube which she inserted herself and then an NJ tube.

The other makes stickers on medical tape to hold the tube. My daughter has very sensitive skin and pretty much ALL tape bothered her, except for the stickers. She was 18 so embarrassed by them, but they did help. Your daughter might be too old for them too, but thought I'd put it down just in case . We also liked Hypafix tape which we got on Amazon.

Your daughter can also choose to keep the tube in for the next 6-8 weeks or however long she has to do this. Some kids prefer that to inserting the tube. My daughter had to have the NJ tube (which goes to down to the small bowel, so can't be inserted at home) in for 13 weeks. She absolutely hated it at first but got used to it. She also has Gastroparesis, which is why she needed an NJ and GJ tube to bypass the stomach. For Crohn's an NG tube should work just fine.

Good luck! Let us know if you have any more questions. Tell her to hang in there, it does get easier.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
02-11-2016, 08:35 PM   #6
Sophs mom
 
Join Date: Jan 2016
Location: Chicago, Illinois

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Thanks Maya142!!! It sounds like a tube with stylet is definitely worth trying. Honestly, I wish my daughter would leave her tube in all the time but she's too self conscious and she already has Oral Crohn's symptoms to deal with.

Thanks for all the other tips and links. I love the tube stickers! Off to find some good YouTube videos.
02-11-2016, 08:45 PM   #7
Maya142
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My daughter grew to like them! We got the "girl stickers" but now they have more options I think. Keeping the tube in was very hard for her - she was a senior in high school and it added a lot of stress. However, by that point she was 83 lbs and very underweight - ended up being hospitalized several times. So she had to deal with it. Seeing her psychologist, who works with kids with chronic illnesses, helped.

The other thing that helped was having her switch sides. I know it's weird, but for whatever reason, she found that she could insert the tube easily in her left nostril but not on the right. We ended up mostly using the left and we used the left for most of the 13 weeks when she had the NJ tube. She did have some irritation in her sinuses but hopefully your daughter will not have it in that long. You're typically supposed to alternate, but my daughter said inserting it on the right side was harder and more uncomfortable so she just didn't. Worked fine!

Good luck!! Let us know how it goes!
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