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Have they tried a ng-tube it goes from the nose to the tummy and can be

placed every night and taken out in the morning.You can place it your self after

they show you how using a stethscope.They are easy and not permanent we used

them for 6 months with Rebekah before she had her tube put in at 8 months.Your

husband needs to talk with the doctors and listen to why they want to put a tube

in .The reasons are usually to give the child the help they need.He should

look at the help as just that help it doesn't mean failure, or the end it is

like a person who Needs crutches or glasses it helps .I wish you the best.Keep

in

mind your husband doesn't have to give his approval for ANY treatment YOU

do.Do the best you can do.Good Luck.BeckyB.--Mama to 8 kids-2 w/cf--Nana to--2

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Hi All,

I have an 8 year old with CF.

The doctor wants to put in a feeding tube. (for night use only)She is

not gaining the weight that she needs to gain. Her Doctor had put her

on a med that makes her gain. But, we had to take her off because her

blood sugar was to high. So she lost all the weight that she had

gained.

My husband is dead set against the feeding tube. But, I don't know

what else to do. I need some advice.

Should I or Shouldn't I?

Please help.

I am new to this group so bear with me. Email me at any time

Robin

mother of 2

1 w/CF

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Hi Robin,

I guess if it were me and I decided my child needed a g-tube (and that is what

the docs say), I would have to convince my husband that this is the right thing

to do. Has he been to your daughters clinic visits? Maybe the docs need to

explain it to him. I hope this helped. My daughter never needed a gtube so I

am no expert on them.

love,

M

Mom of Nick age 21 nocf and age 19 wcf

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Robin,

My daughter got her g-tube at 16 months. We were very reluctant to do it but in

the end it helped. I was less worried about the g-tube than the nissan

fundoplication (reflux surgery) that happened at the same time. we are happy

that she has her g-tube because if she has a bad day for eating, we can just

give her a bit more in her feed. Also if she is being grouchy about her oral

meds we can shoot them through too! Meals are less of a battle now and we are

not constantly worried about how much she has eaten.

One of the things we were worried would happen with the tube feed was that she

wouldn't want to take anything orally, but we found as long as she didn't have a

tube feed right before a meal or snack, she ate about the same amount.

Hope this helps!

Mom of 5 with CF

Feel free to check out our " adventures in g-tubeland " page at our group

http://groups.msn.com/TeamJane

G Tubes

Hi All,

I have an 8 year old with CF.

The doctor wants to put in a feeding tube. (for night use only)She is

not gaining the weight that she needs to gain. Her Doctor had put her

on a med that makes her gain. But, we had to take her off because her

blood sugar was to high. So she lost all the weight that she had

gained.

My husband is dead set against the feeding tube. But, I don't know

what else to do. I need some advice.

Should I or Shouldn't I?

Please help.

I am new to this group so bear with me. Email me at any time

Robin

mother of 2

1 w/CF

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Hi Robyn,

I have never dealt with a g-tube, but it is very important for

people, young and old, with cf to keep their weight up. It has to do

with their inmune system, and being able to fight possible

infections. If the child/adult is not absorving the vitamins,

mineral, nutrients as a whole, it leaves the body open to

opportunistics infections. This disease is a bugger and I do know

about opportunistic infections in a's lungs. Your husband needs

to see the whole picture.

Wish you all the best,

mom of a 10 wcf, Venanzio 7 nocf, Pepe 3 nocf

> Hi All,

> I have an 8 year old with CF.

> The doctor wants to put in a feeding tube. (for night use only)She

is

> not gaining the weight that she needs to gain. Her Doctor had put

her

> on a med that makes her gain. But, we had to take her off because

her

> blood sugar was to high. So she lost all the weight that she had

> gained.

> My husband is dead set against the feeding tube. But, I don't know

> what else to do. I need some advice.

> Should I or Shouldn't I?

> Please help.

> I am new to this group so bear with me. Email me at any time

>

> Robin

> mother of 2

> 1 w/CF

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Robin,

Hello and welcome. Is your little girl on the growth charts? I was

just wondering how thin a child has to be, before a doctor recommends

a feeding tube.

Gale

> Hi All,

> I have an 8 year old with CF.

> The doctor wants to put in a feeding tube. (for night use only)She

is

> not gaining the weight that she needs to gain. Her Doctor had put

her

> on a med that makes her gain. But, we had to take her off because

her

> blood sugar was to high. So she lost all the weight that she had

> gained.

> My husband is dead set against the feeding tube. But, I don't know

> what else to do. I need some advice.

> Should I or Shouldn't I?

> Please help.

> I am new to this group so bear with me. Email me at any time

>

> Robin

> mother of 2

> 1 w/CF

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I used a ng-tube for 6 months with Rebekah while breastfeeding .If not during

a feeding she would blow everything back up the syringe.We used hers for

bolus feedings which are usually small frequent amounts .Rebekah weighed at

birth

7.8 being a month early steroids and gest.diabetes gave her the extra she

needed at 8 months she weighed 11.8 pounds.She had severe reflux it was apparent

the tube was a life saver along with a nissen fundoplication.We took her

mic-key out on her 5th b-day.At 6.9 years she is 43.5 inches (or more) and 41.5

pounds.As I am a small person (5.1 and 105 lbs.). I was 45 pounds at 7 so I

don't

expect a giant .Considering she has psuedo and B.cepacia I think she is doing

great. I don't think doctors recommend surgery without just cause. I think

parents have a responsibility to educate themselves for the best long term

outlook for their child .I am not a pessimist or an optomist I am a Realist and

the

reality of cf is it is progressive and the healthier our kids are the better

their future is.We have personally been fighting cf for 20 years and 5 days my

2nd child has cf and Monday was his 20th B-day.Good Luck .BeckyB-Mama to-8-

2w/cf--Nana to 2.

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