Feeding tube help needed

[Worried mama]

For those of you who have used a feeding tube, do you have any tips for sleeping without the line getting bent or stuck under an arm which then stops the flow of formula and then sounds the alarm? Happened 3 different times last night...not making for a good nights sleep. That alarm is loud too!

Other issue we are having is taking the tecaderm tape off my sons cheek in the am....it leaves a horrible red mark which lasts all day and it's painful to remove the tape. We do use a 'no sting barrier' before applying the tecaderm but it doesn't seem to do much.

 

[pdx]

Tegaderm is really hard to remove! Tegaderm is what we used when my daughter kept her tube in all day long, and it would stay on for weeks. We used Hypafix tape when she was taking her tube out each day. We got it from our home health company, but you can also buy it on Amazon. We just cut two small circles (about an inch in diameter or maybe a little smaller), and put one close to her nose, and one further back near her ear. It was much easier to remove than the Tegaderm, and less irritating.

I don't have any advice about the tube bending--sorry!

 

[Farmwife]

Prep Protective Skin Barrier!!!! <--------- that's the actual name. We got insurance to cover it. They sent it with the supplies.
We use this on Grace all the time. It's a RUB on clear gel that you put on before the tape.
It works great but make sure to let the gel dry. Also removing tape in the shower help loosen it up. We used makeup remover to get the extra glue off.

The night one is harder. Time will help the most and your son learning not to sleep a certain way but if you split a straw and put it around the tube it helps it from getting pinched.

 

[Worried mama]

Thank you! Will try these tips!!

 

[Maya142]

We used Hypafix too and got it on Amazon.
The other thing that helped were Feeding Friends stickers. You get them here:http://www.kidshopechest.com/feeding-friends-stickers.aspx

They're kind of babyish but for whatever reason, they worked best on my daughter's skin (and if he's just using them at night, well, no one has to know). They used them when she was in the hospital, which is how we found out about them. She initially used them just at night with the NG tube. When she switched to a NJ tube and had to have it in all the time, she only used them sometimes and would only use certain ones that she thought were less babyish .

The other tape we tried that worked is HY tape. We got that on Amazon.

Tegaderm and Duoderm caused a very red, itchy face for her and they actually had to give her Benadryl in the hospital for it.

There is also No Sting which is what you put on to prep the skin. That protects the skin - it's like a little alcohol swab you rub over the area. Our homecare company (we used Chop homecare) gave it to us.

I wish I had advice about the tube bending but that happens to us too - 1.5 years later! M has an IV pole which we keep close to her bed and we hang the backpack off of it - that way, if she has to go to the bathroom at night, she can just grab the backpack and not take the whole IV pole.

There are "line tamers" you can get online - I'm not sure if they work. There are some suggestions here about household stuff to keep the line straight: http://www.feedingtubeawareness.org/overnight-feeds/

Honestly, we have never tried these things. M used to wake up when the pump alarmed and fix whatever was wrong and go right back to sleep. Now she has gotten so used to hearing the pump, she sleeps through it. I sometimes sleep right through it too! Apparently, that is quite common in teenagers - they just get used to the sound.

It hasn't been a huge issue for us - it happens about once a week. Wish I had better suggestions.

Good luck!


**Edited to add: Sorry, didn't see the that you had already tried No Sting:ybatty:!

 

[Worried mama]

Thanks all, I ordered some hypafix...

 

[CarolinAlaska]

I second the hepatic too. Awesome stuff.

 

[Worried mama]

Used the hypafix last night and it worked soooo much better than that awful tecaderm. Thank you all for the suggestion! I'm going to email the nurse at chop so she can tell other patients about it..

 

[Maya142]

So glad!! It worked well on my daughter's very sensitive skin.

 

[Tesscorm]

I used a small/medium butterfly type hair clip to 'clip' the tube to S's t-shirt, near the front of his shoulder. The clip was loose enough to not squeeze the tube but was small enough that it didn't interfere with his sleeping.

We still had the odd twisting/bending of tube but the clip helped quite a bit.