NG Tube feeding / suppose to be this difficult?

February 3, 2003

hi crystal, im sorry to say there is no easy answer. my son alex had the

same thing and he was always throwing the tube up from his reflux. we finally

put a g-tube in and things are better but not there yet. they suggested the

fundo surgery but im on the fence about it. we will try the j-tube first,

that will bi pass the stomach all together. just be patient and be strong.

when i feel like that i just think about what they are going through and i

guess i can wear the RN label. janelle mom to alex 6wcf

February 3, 2003

Hi Crystal,

had an NG tube when he was a baby, when he was about 8 months old the

docs stopped it because they said it aggravated reflux, dont know if

this is true in all cases or not. now has a G-tube, and I know what

you mean about the mixing formula and setting up the pump, I think we are

much better nurses than nurses. Anyway, just something to think about if he

has bad reflux. Have a good day.

Take care,

, mommy of 4, 3 wcf, a g-tube and his wonderful personality,

, 17, Caleb, 7, and , 6

February 3, 2003

Have you tried bolus feeds and taking the tube out.You can put it in with a

stethescope .Rebekah had problems with the tape and tegaderm patches.We used

a clear lubricant to get the tube down easier.Rebekah did better with the

tube only being used with breastfeeding I felt like an octopus hold the baby

,latch her on good hold the tube pour the formula into the bolus syringe LOL

it was not funny then but she is almost six now.We did go with the nissen

fundoplication and g-tube,mic-key button which we had problems with the skin

being irritated by the glue from tape and the buttons themselves but they

saved her from starving .My daughter had her button for over 4 years ,she

used a ng tube for about 6 months. Good Luck and ask any

questions.BeckyB.Mommy to 8 kids-2 wcf--19 & 5 and Nana to 2

February 3, 2003

Hi All,

Adam just had an appt last wednesday at the CF clinic with both the

GI doc and the pulm. We were there for FIVE hours. Needless to say

that he and I were both tired, as well as my Mom who went along to

tend him while the docs spoke to me. (He was a good little guy in

that he showed them THREE times just what his reflux is like! He

soaked the table in one of the rooms we were in. LOL!) [bTW -- he's

11mo and only just now topped 14 pounds. His length though is 27

inches. He is long and skinny, but then so is his sister.]

Anyway, we left with a months supply of Neocate and instruction for

doing NG nighttime tube feedings. Here's the problem... he hates the

tube. Aside from always trying to pull it off his face -- He refluxed

on Sunday and it came out, so I had to put it back in before he went

to bed. Then he played with the tape until bedtime and fought tooth

and nail going to bed. By 1:15am he had pulled it out!!! We've had to

put it in each day! Doesn't that hurt his poor little esophagus and

nose?

Mixing the formula and setting up the bag and the feed-pump I feel

like I should have an RN after my name....

I'm exhausted and frustrated... He sees the GI doc Feb 14th to see

how he's doing. One option is the fundo and button. I'm not sure how

I'd like that, other than he won't have to worry about the tape and

breaking out on his face.

Does anyone have any suggestions for getting past the frustration?

That's all I see right now.... Also any suggestions for the face, he

reacts badly to tape anyway and if he keeps ripping it off daily he's

going to feel even worse! (They had such a problem with his trying to

pull out his NG tube in the NICU they had to sock his hands. He got

out of them. Now that he's older he's even more adept at getting

things -- socks, mittens, etc -- off his hands. I tried it last

night, no success.)

Thanks for letting me vent.

Crystal

mom to Adam 11mo wcf, le 3yr nocf.

February 3, 2003

The g-tube was the best thing we ever did for our son. He didn't eat

enough and had fallen off the charts. The button was placed a year

ago and it is just a part of his life now. He is now 22 months old

and doesn't even play with it. Please don't be afraid of the g-tube--

if anything--be afraid of the ng tube. It IS hard on their nose and

throat. It also gives them a very negative association with food.

I also feel like a nurse mixing all the medications and using the

pump all the time. I have to remember to be a mommy first.

Please visit our website to see photos of him with the button.

http://www.babyfergie.com

--mom to Ashton, 22 months wcf

February 3, 2003

Crystal,

It's been a long time now so I hope I remember all of this for you

and can help even a little. Wyatt went into the hospital a week

before his first bday for failure to thrive. They released us on his

bday (Happy Birthday to us!) and I had to do an NG tube for a few

months at home. Wyatt also loved to pull it out and his face was very

sensitive. He broke out in such a bad rash. I put a piece of

something, thick, soft and pink (I think it was duaderm but can't

remember for sure) it was a big square about the size of a mousepad

and I had to cut it to fit his face. I put that first, then the ng

tube layed on that and I taped the crap out of it from there. All the

way behind his ear the best we could and I tried to have almost

nothing flapping around so he would feel it less. For the most part

it worked as long as we got 99.9% of it taped down so there wasn't

much room to grab. When he did pull it out I didn't worry. I just let

it be out all day and placed it before bed as tight as I could. He

never pulled it out at night. At least it let his skin breathe.

The doctors didn't seem worried and neither was I if we had to

place it often. He still used the pacifier at the time so I'd get him

to suck on the paci the best I could to get him to swallow (or take a

drink since he used a cup by then) and it usually went down fairly

easily. It's frustrating of course but once you get the routine down

it should become a little easier.

Hang in there...Christy Mom of Wyatt 7wcf and Hunter 2.5 wocf

-- In cfparents , " Crystal H <illianisis@y...> "

<illianisis@y...> wrote:

> Hi All,

>

> Adam just had an appt last wednesday at the CF clinic with both the

> GI doc and the pulm. We were there for FIVE hours. Needless to say

> that he and I were both tired, as well as my Mom who went along to

> tend him while the docs spoke to me. (He was a good little guy in

> that he showed them THREE times just what his reflux is like! He

> soaked the table in one of the rooms we were in. LOL!) [bTW -- he's

> 11mo and only just now topped 14 pounds. His length though is 27

> inches. He is long and skinny, but then so is his sister.]

>

> Anyway, we left with a months supply of Neocate and instruction for

> doing NG nighttime tube feedings. Here's the problem... he hates

the

> tube. Aside from always trying to pull it off his face -- He

refluxed

> on Sunday and it came out, so I had to put it back in before he

went

> to bed. Then he played with the tape until bedtime and fought tooth

> and nail going to bed. By 1:15am he had pulled it out!!! We've had

to

> put it in each day! Doesn't that hurt his poor little esophagus and

> nose?

>

> Mixing the formula and setting up the bag and the feed-pump I feel

> like I should have an RN after my name....

>

> I'm exhausted and frustrated... He sees the GI doc Feb 14th to see

> how he's doing. One option is the fundo and button. I'm not sure

how

> I'd like that, other than he won't have to worry about the tape and

> breaking out on his face.

>

> Does anyone have any suggestions for getting past the frustration?

> That's all I see right now.... Also any suggestions for the face,

he

> reacts badly to tape anyway and if he keeps ripping it off daily

he's

> going to feel even worse! (They had such a problem with his trying

to

> pull out his NG tube in the NICU they had to sock his hands. He got

> out of them. Now that he's older he's even more adept at getting

> things -- socks, mittens, etc -- off his hands. I tried it last

> night, no success.)

>

> Thanks for letting me vent.

> Crystal

> mom to Adam 11mo wcf, le 3yr nocf.

February 3, 2003

My daughter, who is almost 3, has had a Nissen fundo and has a g-

tube. This hasn't been a cureall for her, but it has kept her

alive. She is currently under 18 lbs. Just a word of warning about

the fundo, it can cause something called dumping syndrome. has

this, and it has caused us GREAT problems with feeding. It seems

that it is usually fairly easy to control but we haven't been able to

do that. She tolerates much less tube feeds now than she did before

the fundo 2 years ago. She had her g-tube for 8 months before the

fundo. I will say that her lungs have improved dramatically from the

fundo though. She was aspriating and this caused her lots of lung

problems and required oxygen all the time before the surgery. Within

2 months she was able to come off of the o2 for the first time.

I just wanted to make sure you realize that a fundo isn't always a

perfect solution. I don't regret having it, she needed it, but

it hasn't solved all of our problems.

Georgianna