Re: G-tube for Autumn-Jodi Z

September 14, 2005

Hi Jodi. The doctor also mentioned possibly trying the ng tube as a

trial. He said we would be in the hospital for a couple of days and

they would teach me to put it in and then they could see how she does

with the feedings before the g-tube. I just dont know what would be

worse, constantly inserting the tube (I'm sure she will pull at it)

adn having her go through that or just jump to the g-tube and get it

done with. He said the g-tube is just so much simpler but we are

also thinking surgery, scar, and pain and he did mention long term

use. I would rather g-tube than ng tube though because of all Autumn

has been through I think she would handle that better. They showed me

what the button looked like and it reminds me of the plugs for inner

tubes. Are they safe or can things get in there and hurt her? Is it

safe for her to sleep on her stomache..that's the only way she

sleeps. My husband and I have spoke to eachother and with everything

that has gone on with Autumn we just want her to be healthy but then

we get torn. One part of me jumps and says " yes! get the tube and

calories " the other part says " maybe if I give her a little more ice

cream...... " it's just obvious the 'little more ice cream' hasn't

worked yet but I keep thinking it might. Thank you for the

information. One thing that my husband and I have talked about is

Autumn and just how much she sleeps. she sleeps a lot. 12 to 14

hours at night and a 3-5 hour nap, sometimes longer and I have to

wake her up then she can go back to bed a couple of hours later.

When I tell people this they say it must be a growth spurt and I

laugh and just say this 'growth spurt' has gone on for months and

hasn't resulted in any growth! We wonder if maybe she is not doing

as well as we thought. When she is up, she is active and happy adn

looks fine, but she gets worn out easily and loves to sleep A LOT. I

would be interested to know if that would change with a g-tube.

thanks for all your input, you make a lot of good points.

mom to Autumn almost 20 mos 16 lbs 14 oz, Summer 2 months

8 lbs 20 inches, Ocean 3 31 lbs, Skye 7 41.5 lbs

> ,

>

> We fought the decision for a g-tube for 4 years. At that time,

most

> of the g-tube fed kids were in much worse condition than Max and

the

> use of them was not nearly as common. We chose, instead, to use an

> ng tube for his feedings. Oh, the thought of another surgery for

> him and then having another scar, and then the whole thing seeming

> so permanent (or at least long term) - just too much for us.

> However, would we make the same decision again? NO! We would have

> gone right for the g-tube from the get-go.

>

> You need to know that the g-tube is not being recommended because

> you have done anything wrong or incorrectly. It is being

> recommended to supplement the already good job that you are doing.

> Autumn is at a very young age, one where her brain must receive as

> much nutrition as it possibly can so that it grows, develops and

> takes in as much as it can of the world around it. Using the pump

> at night will take so much pressure off of you and her. If she has

> a lousy day of eating, you can add a little more to the nighttime

> bag. If she eats really well, you can just know that you are

> getting that much more into her. You are assuring and insuring

that

> her body will not become hypoglycemic. AND you may be able to

avoid

> hospital stays for those times when she is sick, not eating and

then

> spilling ketones. Sometimes it works, sometimes it doesn't, but

> it's worth a try.

>

> I do not think that there is one parent who has regretted the

> decision to place a g-tube. It IS scary. You don't want your

child

> to feel pain. But the benefits far outweigh the discomfort for

both

> of you.

>

> That's just my opinion. But as a parent of an RSS child who has

> done so well because of the g-tube AND as an educator who works

with

> children with learning disabilities, it is essential that you get

> that nutrition into her one way or another. And the g-tube is the

> best and most sure way to do it.

>

> Jodi Z

September 14, 2005

Another potential problem with the ng tube is that if they pull it out

partway while formula is going through it, they can get pneumonia from

formula getting in their lungs...

At 03:27 AM 9/15/2005 +0000, you wrote:

>Hi Jodi. The doctor also mentioned possibly trying the ng tube as a

>trial. He said we would be in the hospital for a couple of days and

>they would teach me to put it in and then they could see how she does

>with the feedings before the g-tube. I just dont know what would be

>worse, constantly inserting the tube (I'm sure she will pull at it)

>adn having her go through that or just jump to the g-tube and get it

>done with. He said the g-tube is just so much simpler but we are

>also thinking surgery, scar, and pain and he did mention long term

>use. I would rather g-tube than ng tube though because of all Autumn

>has been through I think she would handle that better. They showed me

>what the button looked like and it reminds me of the plugs for inner

>tubes. Are they safe or can things get in there and hurt her? Is it

>safe for her to sleep on her stomache..that's the only way she

>sleeps. My husband and I have spoke to eachother and with everything

>that has gone on with Autumn we just want her to be healthy but then

>we get torn. One part of me jumps and says " yes! get the tube and

>calories " the other part says " maybe if I give her a little more ice

>cream...... " it's just obvious the 'little more ice cream' hasn't

>worked yet but I keep thinking it might. Thank you for the

>information. One thing that my husband and I have talked about is

>Autumn and just how much she sleeps. she sleeps a lot. 12 to 14

>hours at night and a 3-5 hour nap, sometimes longer and I have to

>wake her up then she can go back to bed a couple of hours later.

>When I tell people this they say it must be a growth spurt and I

>laugh and just say this 'growth spurt' has gone on for months and

>hasn't resulted in any growth! We wonder if maybe she is not doing

>as well as we thought. When she is up, she is active and happy adn

>looks fine, but she gets worn out easily and loves to sleep A LOT. I

>would be interested to know if that would change with a g-tube.

>thanks for all your input, you make a lot of good points.

>

> mom to Autumn almost 20 mos 16 lbs 14 oz, Summer 2 months

>8 lbs 20 inches, Ocean 3 31 lbs, Skye 7 41.5 lbs

>

>> ,

>>

>> We fought the decision for a g-tube for 4 years. At that time,

>most

>> of the g-tube fed kids were in much worse condition than Max and

>the

>> use of them was not nearly as common. We chose, instead, to use an

>> ng tube for his feedings. Oh, the thought of another surgery for

>> him and then having another scar, and then the whole thing seeming

>> so permanent (or at least long term) - just too much for us.

>> However, would we make the same decision again? NO! We would have

>> gone right for the g-tube from the get-go.

>>

>> You need to know that the g-tube is not being recommended because

>> you have done anything wrong or incorrectly. It is being

>> recommended to supplement the already good job that you are doing.

>> Autumn is at a very young age, one where her brain must receive as

>> much nutrition as it possibly can so that it grows, develops and

>> takes in as much as it can of the world around it. Using the pump

>> at night will take so much pressure off of you and her. If she has

>> a lousy day of eating, you can add a little more to the nighttime

>> bag. If she eats really well, you can just know that you are

>> getting that much more into her. You are assuring and insuring

>that

>> her body will not become hypoglycemic. AND you may be able to

>avoid

>> hospital stays for those times when she is sick, not eating and

>then

>> spilling ketones. Sometimes it works, sometimes it doesn't, but

>> it's worth a try.

>>

>> I do not think that there is one parent who has regretted the

>> decision to place a g-tube. It IS scary. You don't want your

>child

>> to feel pain. But the benefits far outweigh the discomfort for

>both

>> of you.

>>

>> That's just my opinion. But as a parent of an RSS child who has

>> done so well because of the g-tube AND as an educator who works

>with

>> children with learning disabilities, it is essential that you get

>> that nutrition into her one way or another. And the g-tube is the

>> best and most sure way to do it.

>>

>> Jodi Z

>

September 14, 2005

Yikes! Thanks for letting me know!

> >> ,

> >>

> >> We fought the decision for a g-tube for 4 years. At that time,

> >most

> >> of the g-tube fed kids were in much worse condition than Max and

> >the

> >> use of them was not nearly as common. We chose, instead, to use

an

> >> ng tube for his feedings. Oh, the thought of another surgery

for

> >> him and then having another scar, and then the whole thing

seeming

> >> so permanent (or at least long term) - just too much for us.

> >> However, would we make the same decision again? NO! We would

have

> >> gone right for the g-tube from the get-go.

> >>

> >> You need to know that the g-tube is not being recommended

because

> >> you have done anything wrong or incorrectly. It is being

> >> recommended to supplement the already good job that you are

doing.

> >> Autumn is at a very young age, one where her brain must receive

as

> >> much nutrition as it possibly can so that it grows, develops and

> >> takes in as much as it can of the world around it. Using the

pump

> >> at night will take so much pressure off of you and her. If she

has

> >> a lousy day of eating, you can add a little more to the

nighttime

> >> bag. If she eats really well, you can just know that you are

> >> getting that much more into her. You are assuring and insuring

> >that

> >> her body will not become hypoglycemic. AND you may be able to

> >avoid

> >> hospital stays for those times when she is sick, not eating and

> >then

> >> spilling ketones. Sometimes it works, sometimes it doesn't, but

> >> it's worth a try.

> >>

> >> I do not think that there is one parent who has regretted the

> >> decision to place a g-tube. It IS scary. You don't want your

> >child

> >> to feel pain. But the benefits far outweigh the discomfort for

> >both

> >> of you.

> >>

> >> That's just my opinion. But as a parent of an RSS child who has

> >> done so well because of the g-tube AND as an educator who works

> >with

> >> children with learning disabilities, it is essential that you

get

> >> that nutrition into her one way or another. And the g-tube is

the

> >> best and most sure way to do it.

> >>

> >> Jodi Z

> >

September 15, 2005

I'm going to interject here - only because I've personally had an NG

tube. I HATED it. I was on my deathbed about 9 years ago with an

NG tube and it was one of the worst experiences for me - even as an

adult. Not that it might be different for someone else - but, I was

not very fond of it ...... I actually pulled it out while on

Morphine - LOL - that's how my husband knew I was turning a corner!

Sorry - just another thought.

- H

> > ,

> >

> > We fought the decision for a g-tube for 4 years. At that time,

> most

> > of the g-tube fed kids were in much worse condition than Max and

> the

> > use of them was not nearly as common. We chose, instead, to use

an

> > ng tube for his feedings. Oh, the thought of another surgery

for

> > him and then having another scar, and then the whole thing

seeming

> > so permanent (or at least long term) - just too much for us.

> > However, would we make the same decision again? NO! We would

have

> > gone right for the g-tube from the get-go.

> >

> > You need to know that the g-tube is not being recommended

because

> > you have done anything wrong or incorrectly. It is being

> > recommended to supplement the already good job that you are

doing.

> > Autumn is at a very young age, one where her brain must receive

as

> > much nutrition as it possibly can so that it grows, develops and

> > takes in as much as it can of the world around it. Using the

pump

> > at night will take so much pressure off of you and her. If she

has

> > a lousy day of eating, you can add a little more to the

nighttime

> > bag. If she eats really well, you can just know that you are

> > getting that much more into her. You are assuring and insuring

> that

> > her body will not become hypoglycemic. AND you may be able to

> avoid

> > hospital stays for those times when she is sick, not eating and

> then

> > spilling ketones. Sometimes it works, sometimes it doesn't, but

> > it's worth a try.

> >

> > I do not think that there is one parent who has regretted the

> > decision to place a g-tube. It IS scary. You don't want your

> child

> > to feel pain. But the benefits far outweigh the discomfort for

> both

> > of you.

> >

> > That's just my opinion. But as a parent of an RSS child who has

> > done so well because of the g-tube AND as an educator who works

> with

> > children with learning disabilities, it is essential that you

get

> > that nutrition into her one way or another. And the g-tube is

the

> > best and most sure way to do it.

> >

> > Jodi Z

September 15, 2005

Just wanted to add my 2 cents about a g-tube. My son is now 10 and the

doctor was going to insert one at 9 months and then changed his mind. He

finally did it at 20 months after a long and torturous time. Many, many

illnesses, stress, etc. Not to mention he was constantly spilling ketones

and pretty much sat like a lump. The g-tube when finally placed has been a

godsend. I found his energy level definitely improved. His health

definitely improved and of course, he gained and grew. It took time but he

is finally healthy and robust and we had the g-tube removed this spring.

Yes, it was 8 long years but I can't imagine the " hell " it would have been

without it. We, too, were scared to death to do this to him, but once we

had it done, what a relief. I know we always had a fast line if he needed

food or fluids or medicine for that matter. I didn't have to fight with him

or have him spit it out because it tasted bad.

In my opinion this is a lifesaving gift that you can give your child. At

the very least, a better quality of life. It won't be forever and the years

will fly. They did for us.

Anyway, I know you will make the best decision for your child.

Judy

Re: G-tube for Autumn-Jodi Z

> Hi Jodi. The doctor also mentioned possibly trying the ng tube as a

> trial. He said we would be in the hospital for a couple of days and

> they would teach me to put it in and then they could see how she does

> with the feedings before the g-tube. I just dont know what would be

> worse, constantly inserting the tube (I'm sure she will pull at it)

> adn having her go through that or just jump to the g-tube and get it

> done with. He said the g-tube is just so much simpler but we are

> also thinking surgery, scar, and pain and he did mention long term

> use. I would rather g-tube than ng tube though because of all Autumn

> has been through I think she would handle that better. They showed me

> what the button looked like and it reminds me of the plugs for inner

> tubes. Are they safe or can things get in there and hurt her? Is it

> safe for her to sleep on her stomache..that's the only way she

> sleeps. My husband and I have spoke to eachother and with everything

> that has gone on with Autumn we just want her to be healthy but then

> we get torn. One part of me jumps and says " yes! get the tube and

> calories " the other part says " maybe if I give her a little more ice

> cream...... " it's just obvious the 'little more ice cream' hasn't

> worked yet but I keep thinking it might. Thank you for the

> information. One thing that my husband and I have talked about is

> Autumn and just how much she sleeps. she sleeps a lot. 12 to 14

> hours at night and a 3-5 hour nap, sometimes longer and I have to

> wake her up then she can go back to bed a couple of hours later.

> When I tell people this they say it must be a growth spurt and I

> laugh and just say this 'growth spurt' has gone on for months and

> hasn't resulted in any growth! We wonder if maybe she is not doing

> as well as we thought. When she is up, she is active and happy adn

> looks fine, but she gets worn out easily and loves to sleep A LOT. I

> would be interested to know if that would change with a g-tube.

> thanks for all your input, you make a lot of good points.

>

> mom to Autumn almost 20 mos 16 lbs 14 oz, Summer 2 months

> 8 lbs 20 inches, Ocean 3 31 lbs, Skye 7 41.5 lbs