Re: What warrants a g-tube?

[Guest guest]

Liam was 8 months when we realised that we were fighting a losing

battle to feed him enough calories to continue gaining weight. We

were gettin g up every 2 hours overnight to give him 20 or 30ml from

a bottle to prevent nocturnal hypoglycaemia. That was as much as he

would drink in one go.

The community nurse suggested trying a naso-gastric (up his nose and

down the back of the throat into the stomach) tube for overnight

pump feeds, just to see if this helped increase Liam's total calorie

intake. Apart from the usual steep learning curve with pumps,tubes

etc. it only took a few weeks for us to realise that Liam needed to

be tube fed, as we thought for 8 months that we had a lovely quiet

placid baby. once he got some calories in him he suddenly came to

life!! He was boistrous, animated and had heaps more energy.

This was a good trial for us and we arranged for a g-tube as soon as

possible, because we were sure that it was the right thing to do

after trialling with a naso-gastric tube.

good luck

Damian

>

> I was wondering if there are a specific set of criteria that would

> warrant getting a g-tube placed. I know that all of our kids

> struggle with weight gain, but what is the point at which you get

> that tube?

>

> A follow up question to that is whether our kids are expected to

> have slowed down growth after the age of 12 months just like the

> rest of the population of kids. Dalia has only gained 1 lb in the

> last 3 months (since she turned 12 months) and barely grew in

height

> or head. To me and others, she does not look " skinny " or

> undernourished...she is just small.

>

> She takes in maybe 600 calories on a really good day, which I know

> is way less than the average 15 month old, but I remember Dr. H

> saying that Dalia was thrifty with her calories and didn't need as

> much. This was back at the convention though.

>

> I just would like to know maybe what Dr. H. considers " g-tube

> material " .

>

> Sheryl

[Guest guest]

This subject is really interesting to me.

May I ask some basics? When the decision is made to tube feed, is the

surgery pretty major? Is the machine itself very difficult to deal

with?

Thank you!

J

Re: What warrants a g-tube?

Liam was 8 months when we realised that we were fighting a losing

battle to feed him enough calories to continue gaining weight. We

were gettin g up every 2 hours overnight to give him 20 or 30ml from

a bottle to prevent nocturnal hypoglycaemia. That was as much as he

would drink in one go.

The community nurse suggested trying a naso-gastric (up his nose and

down the back of the throat into the stomach) tube for overnight

pump feeds, just to see if this helped increase Liam's total calorie

intake. Apart from the usual steep learning curve with pumps,tubes

etc. it only took a few weeks for us to realise that Liam needed to

be tube fed, as we thought for 8 months that we had a lovely quiet

placid baby. once he got some calories in him he suddenly came to

life!! He was boistrous, animated and had heaps more energy.

This was a good trial for us and we arranged for a g-tube as soon as

possible, because we were sure that it was the right thing to do

after trialling with a naso-gastric tube.

good luck

Damian

>

> I was wondering if there are a specific set of criteria that would

> warrant getting a g-tube placed. I know that all of our kids

> struggle with weight gain, but what is the point at which you get

> that tube?

>

> A follow up question to that is whether our kids are expected to

> have slowed down growth after the age of 12 months just like the

> rest of the population of kids. Dalia has only gained 1 lb in the

> last 3 months (since she turned 12 months) and barely grew in

height

> or head. To me and others, she does not look " skinny " or

> undernourished...she is just small.

>

> She takes in maybe 600 calories on a really good day, which I know

> is way less than the average 15 month old, but I remember Dr. H

> saying that Dalia was thrifty with her calories and didn't need as

> much. This was back at the convention though.

>

> I just would like to know maybe what Dr. H. considers " g-tube

> material " .

>

> Sheryl

[Guest guest]

My daughter had a Nissen fundo together with the G-tube placement. All of it

together was about two and a half hours. They did let us go in with our daughter

in the OR, and let us stay with her untill she was asleep, which was within

about 45 seconds. After she was wheeled in the recovery room, they called out

for us, and let us come in before she woke up. They did have her on morphine

throughout that time, and probably her hearing my voice and my touch, was a

little more comforting, then to wake up among strangers. They had the G-tube

hooked up with an extension tubing and at the end of it was an empty syringe,

which was hooked up, to give her stomach " a rest " . I am not sure if it's just

for the Nissen part or if they do that to kids that just get the g-tube too. The

nurses and the doctor were wanting to be really sure before they discharge us,

on how to use the tube and how to clean the site. It is then when they would

discharge us, they wanted to be sure that we knew how to do

everything if we were to go home and do it by ourselves.

Our reason for the tube, was pretty obvious. I have struggled since birth to

make her eat. There were often times where she would lose weight. It was bad

enough that she was born so tiny that I was told that she isn't even on the

growthchart at all at birth (and full term at that). I breastfed for 11 months

till she decided she didn't want it anymore, where she did gain some weight, but

after that, it really started to go downhill from there. Even just solids were a

struggle. The best tasting foods and juices were a struggle. It was probably

from the GERD, that she was affraid to eat, but even with the medicines

(Periactin, Reglan, Zantac and Prevacid), the weighgain or even weightloss at

times, was too much for us and her doctor. We do have to drive about 9 hours to

get to Denvers Children's Hospital, but it was definately worth it. Besides that

heartache for me to watch her in any kind of pain on discomfort, just watching

the scales and every two weeks, more and more ounces adding

to it, is so great. I am not sure if it's from either one of the surgeries or

both, but my little girl has changed a lot in the last couple of months. She has

cheeks on her face, I am not able to see ribs anymore when she's laying down,

she has started to talk a lot more (even if it is mostly just babbles at almost

3 years old), she is much happier throughout the day, her whole attitude changed

for the better.

You also asked about the machine. My daughter is on the Kangaroo machine at

night, and gets some bolus feedings during the day. The machine itself is really

easy. I just have to prime the tube first before I hook her up. I wait till she

is asleep before I do hook her up too. Priming it is simple. You just hang the

bag up, put the tube in the " gaps " or " slots " , I am not sure what to call it,

but I don't shut it just yet. Then I fill the bag with her Nutren JR, and let it

run all the way to the tip of the g-tube, untill a couple of drops come out, to

make sure it doesn't have airbubbles in it. Then I close the latch part of the

machine, close off the bag, put her in bed, hook her up, and turn the machine

on, and press start. As complicated as it seemed at first, it took me only one

time to get the hang of it. The machine that we have does have an alarm, when

the bag is empty, and when the tube has a kink in it or something where the

formula cannot go through. It also has an alarm for a

couple of other small things, but I usually just turn the machine off, check

for any kinks, and turn it back on, if the alarm does go off. It's pretty quiet,

so a babymonitor in the room and your bedroom might help out on that. We have

even used the machine on a long roadtrip we had to make a few states over to

Alabama. We just took the IV stand with the machine still on it, filled a bag up

and fed her that way. For a child with reflux, or like mine who has a tiny

stomach that can only handle about 3 ounces at the most at an age of almost 3

years old, the machine is a lifesaver. It goes slow enough, yet I can be sure

that she gets fed, and that she is not going to get uncomfortable. I have

noticed that with the bolus feeds, it doesn't take long before she starts

pouting and pointing towards her tummy or retch.

To make a very long story like mine shorter, the g-tube has helped us and her

out tremendously. My daughter has changed so much for the better. I still would

like to see her be able to wear 18 month old pants, that won't drop. They are

great in length but still too big around her waist. One of these days she will

be able to wear them.

Good luck, and if you have any other questions, feel free to ask.

wrote:

This subject is really interesting to me.

May I ask some basics? When the decision is made to tube feed, is the

surgery pretty major? Is the machine itself very difficult to deal

with?

Thank you!

J

Re: What warrants a g-tube?

Liam was 8 months when we realised that we were fighting a losing

battle to feed him enough calories to continue gaining weight. We

were gettin g up every 2 hours overnight to give him 20 or 30ml from

a bottle to prevent nocturnal hypoglycaemia. That was as much as he

would drink in one go.

The community nurse suggested trying a naso-gastric (up his nose and

down the back of the throat into the stomach) tube for overnight

pump feeds, just to see if this helped increase Liam's total calorie

intake. Apart from the usual steep learning curve with pumps,tubes

etc. it only took a few weeks for us to realise that Liam needed to

be tube fed, as we thought for 8 months that we had a lovely quiet

placid baby. once he got some calories in him he suddenly came to

life!! He was boistrous, animated and had heaps more energy.

This was a good trial for us and we arranged for a g-tube as soon as

possible, because we were sure that it was the right thing to do

after trialling with a naso-gastric tube.

good luck

Damian

>

> I was wondering if there are a specific set of criteria that would

> warrant getting a g-tube placed. I know that all of our kids

> struggle with weight gain, but what is the point at which you get

> that tube?

>

> A follow up question to that is whether our kids are expected to

> have slowed down growth after the age of 12 months just like the

> rest of the population of kids. Dalia has only gained 1 lb in the

> last 3 months (since she turned 12 months) and barely grew in

height

> or head. To me and others, she does not look " skinny " or

> undernourished...she is just small.

>

> She takes in maybe 600 calories on a really good day, which I know

> is way less than the average 15 month old, but I remember Dr. H

> saying that Dalia was thrifty with her calories and didn't need as

> much. This was back at the convention though.

>

> I just would like to know maybe what Dr. H. considers " g-tube

> material " .

>

> Sheryl

[Guest guest]

, thank you. That really helped me get an idea. I still feel so

clueless. I am glad your little girl is doing so well with it!

Re: What warrants a g-tube?

Liam was 8 months when we realised that we were fighting a losing

battle to feed him enough calories to continue gaining weight. We

were gettin g up every 2 hours overnight to give him 20 or 30ml from

a bottle to prevent nocturnal hypoglycaemia. That was as much as he

would drink in one go.

The community nurse suggested trying a naso-gastric (up his nose and

down the back of the throat into the stomach) tube for overnight

pump feeds, just to see if this helped increase Liam's total calorie

intake. Apart from the usual steep learning curve with pumps,tubes

etc. it only took a few weeks for us to realise that Liam needed to

be tube fed, as we thought for 8 months that we had a lovely quiet

placid baby. once he got some calories in him he suddenly came to

life!! He was boistrous, animated and had heaps more energy.

This was a good trial for us and we arranged for a g-tube as soon as

possible, because we were sure that it was the right thing to do

after trialling with a naso-gastric tube.

good luck

Damian

>

> I was wondering if there are a specific set of criteria that would

> warrant getting a g-tube placed. I know that all of our kids

> struggle with weight gain, but what is the point at which you get

> that tube?

>

> A follow up question to that is whether our kids are expected to

> have slowed down growth after the age of 12 months just like the

> rest of the population of kids. Dalia has only gained 1 lb in the

> last 3 months (since she turned 12 months) and barely grew in

height

> or head. To me and others, she does not look " skinny " or

> undernourished...she is just small.

>

> She takes in maybe 600 calories on a really good day, which I know

> is way less than the average 15 month old, but I remember Dr. H

> saying that Dalia was thrifty with her calories and didn't need as

> much. This was back at the convention though.

>

> I just would like to know maybe what Dr. H. considers " g-tube

> material " .

>

> Sheryl