Re: G-tube for Autumn

[Guest guest]

. Wow - do I have thoughts for you. I went through this

same thought process. I've struggled and struggled for months about

the feeding tube, growth hormone and the reality of whether or not

Ian really has RSS (which he does). Please - DO NOT FEEL GUILTY.

You have done NOTHING wrong - and never ever feel like a failure.

RSS likes to make us moms feel like we are not doing something we

should - but, that's the nature of the beast - it has nothing to do

with what we are doing. If anything, you are doing the exact thing

you should which is try to determine what is best for your child and

she couldn't ask for anything better.

You are right - it is a decision you, your family and physician need

to decide together. We have not ourselves been able to come to that

decision just yet. We have been through this ourselves, over and

over again. At this time, we have decided Ian is getting adequate

nutrition through his supplemental drinking and eating. However, we

have determined that if he were not drinking his supplement (Nutren,

Jr) he would not be able to sustain enough calories without a

feeding tube. When he is sick it is the same - he usually loses

ground. And, not giving him the feeding tube is also a difficult

decision because of his set-backs when he gets sick.

I think the biggest issue we face when our children have to go

through this procedure is the pain we feel that our children might

feel and the ongoing dilema that our child will be " more " different

than their siblings or other children of their age. And, of course,

it's more for us to think about as far as healthcare is concerned.

I can't tell you which way to go - but, I can tell you that I

applaud you for working through all of this in your head. Trust

your instincts. What would Autumn want for herself if she were able

to make the decision and what difference would it make for Autumn

for the future.?

I hope I've helped in some way. Please feel free to e-mail me

privately if you wish to vent or discuss further. Trust me, I've

been where you are and so have many, many of the moms here as you

know from their particular situations. I'm sure they will have good

advice for you.

Our best to you.

- H ()

> Autumn had her GI appt this morning. He wants her to get a G-

tube.

> She weighed in at 16 lbs 14 oz (and has not had a bm in a few days

so

> might be lower) and 29.25 inches at almost 20 mos. I know it's

not

> horrible but she was 15 11 at one year and she has a hard time

with

> weight. She keeps having set backs from being sick and hospitals

etc

> and they think it would be best for her. she does eat on her own,

not

> much, but she likes to eat. Periactin doesn't work for her. Been

on

> it for 9 mos. They want some overnight feeds and access for when

she

> is sick to keep her from gettiong set back adn stuff, but said it

is

> our choice ultamitly. How do I make the right choice? I feel

like a

> failure or like I am not doing enough even though I know it's not

> true, I can't help but feel guilty. What'syour input? Would g-

tube

> be better off than no tube? They don't want to set back her

eating so

> it would be mostly night time and stuff to get about 1 or so cans

of

> peptamin in her.

>

> mom to Autumn,Summer, Ocean and Skye

[Guest guest]

,

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

[Guest guest]

-

What a tough decision. I thought I'd share my thoughts.

Pippin had her GT placed at 4mo. It was a no decision for us, as she

was so FTT we really had no choice. Would I do it again?

YES in a heartbeat.

Pippin's GT saved the quality of my marriage, my older daughters

quality of life, my peace of mind, not always having to fret over how

much she took in, it saved her life in times of sickness, it has saved

her from hospital stays & IV's. (Although we had many of those in her

first year). Pippin became so much healthier, her hair began to grow,

she began to smile, she became a 'normal' baby after her GT.

I can honestly say that we would not have had Baby Ryker if not for

the GT.

Prior to the GT all I did was try to get her to eat. Sometimes at

the convention I see children w/o GT and how the parents are consumed

with the total amount in. Rightfully so. That wasn't working for me.

I was miserable! I don't want to say GT is the only decision but for

our family it was the best decision. We could finally relax and enjoy

our petite Pippin.

Hope this helps.

I hope I did not offend any non GT parents out there " consumed " with

total amount in. Please accept my apologies if I did.

ps I love your names!

Team Lapish

Dan, Jenyfer, Tully, Pippin (RSS-3 years old in two months) & Ryker

[Guest guest]

I'm a non-Gtube parent - and, honestly - I would go for the GTube at

this point. I'm honestly tired of worrying about the calories

<grin>. No offense taken <bigger grin>. Ian just happens to

be " right in the middle " . Dr. H mentioned at the convention that he

didn't need a G-tube. But, it will be interesting to hear more at

our appointment in October when she has a " full scope " of his

RSS " life " .

Am I making any sense? I'm so tired!

-H

> -

>

> What a tough decision. I thought I'd share my thoughts.

>

> Pippin had her GT placed at 4mo. It was a no decision for us, as

she

> was so FTT we really had no choice. Would I do it again?

> YES in a heartbeat.

>

> Pippin's GT saved the quality of my marriage, my older daughters

> quality of life, my peace of mind, not always having to fret over

how

> much she took in, it saved her life in times of sickness, it has

saved

> her from hospital stays & IV's. (Although we had many of those in

her

> first year). Pippin became so much healthier, her hair began to

grow,

> she began to smile, she became a 'normal' baby after her GT.

> I can honestly say that we would not have had Baby Ryker if not

for

> the GT.

>

> Prior to the GT all I did was try to get her to eat. Sometimes

at

> the convention I see children w/o GT and how the parents are

consumed

> with the total amount in. Rightfully so. That wasn't working for

me.

> I was miserable! I don't want to say GT is the only decision but

for

> our family it was the best decision. We could finally relax and

enjoy

> our petite Pippin.

>

> Hope this helps.

>

> I hope I did not offend any non GT parents out there " consumed "

with

> total amount in. Please accept my apologies if I did.

>

> ps I love your names!

>

> Team Lapish

> Dan, Jenyfer, Tully, Pippin (RSS-3 years old in two months) & Ryker

[Guest guest]

,

One thing I recommend is getting a good surgery. We found an excellent surgeon

who did it all endoscopically, so he had onyl 4 1 inch incisions for both a

g-tube and a very excellent fundo which has allowed him to keep many cals in

through his weight tripling even though he has a hyperactive gag reflex. Our

surgeons name was Dave Rothenberg in Denver. Hah - I just found a video of him

at work at http://www.wusatv.com/health/health_article.aspx?storyid=42879. My

computer wouldn't run it, but it might be because of our operating system...

There's a good article at

http://www.pslmc.com/CustomPage.asp?guidCustomContentID=%7BFC1B9F03-9F64-403

2-8E4D-15BDFB94FC58%7D

I'm not sure of his number now, but if you call information for him at

Presbyterian Medical Center at St Luke's in Denver, he may be able to tell you

an excellent surgeon in your area, if you don't already know the one you would

want.

Inga

At 05:10 PM 9/14/2005 +0000, you wrote:

>Autumn had her GI appt this morning. He wants her to get a G-tube.

>She weighed in at 16 lbs 14 oz (and has not had a bm in a few days so

>might be lower) and 29.25 inches at almost 20 mos. I know it's not

>horrible but she was 15 11 at one year and she has a hard time with

>weight. She keeps having set backs from being sick and hospitals etc

>and they think it would be best for her. she does eat on her own, not

>much, but she likes to eat. Periactin doesn't work for her. Been on

>it for 9 mos. They want some overnight feeds and access for when she

>is sick to keep her from gettiong set back adn stuff, but said it is

>our choice ultamitly. How do I make the right choice? I feel like a

>failure or like I am not doing enough even though I know it's not

>true, I can't help but feel guilty. What'syour input? Would g-tube

>be better off than no tube? They don't want to set back her eating so

>it would be mostly night time and stuff to get about 1 or so cans of

>peptamin in her.

>

> mom to Autumn,Summer, Ocean and Skye

>

>

>

>

>

>

>

[Guest guest]

Hi. I have to agree with the plus being no more ivs for fluids when

sick. It would ensure her to keep her weight up and not become

dehydrated. It helps to think if we are going to give her surgery

that it will also prevent things that cause her pain. I am glad that

it has worked wonders for Pippin. It is great to hear of positive

stories about the g-tubes, and I have only heard good things about

them from this group, so maybe that is telling me something. I

mentioned in a previous e-mail that I do wonder why Autumn sleeps so

much. She is my miracle sleeper. She just sleeps the day away.

Sometimes she is only up for 5 hours. I never worried about it until

now, I just figured out of all my kids she was a sleeper, but no I

wonder could it be lack of correct nourishment? She gets worn out so

easily. I am curious if a g-tube would change this.

Thanks for sharing your story!

mom to Autumn almost 20 mos 16 lbs 14 oz, Summer 2 mos 8

lbs, Ocean 3, Skye 7

> -

>

> What a tough decision. I thought I'd share my thoughts.

>

> Pippin had her GT placed at 4mo. It was a no decision for us, as

she

> was so FTT we really had no choice. Would I do it again?

> YES in a heartbeat.

>

> Pippin's GT saved the quality of my marriage, my older daughters

> quality of life, my peace of mind, not always having to fret over

how

> much she took in, it saved her life in times of sickness, it has

saved

> her from hospital stays & IV's. (Although we had many of those in

her

> first year). Pippin became so much healthier, her hair began to

grow,

> she began to smile, she became a 'normal' baby after her GT.

> I can honestly say that we would not have had Baby Ryker if not for

> the GT.

>

> Prior to the GT all I did was try to get her to eat. Sometimes at

> the convention I see children w/o GT and how the parents are

consumed

> with the total amount in. Rightfully so. That wasn't working for

me.

> I was miserable! I don't want to say GT is the only decision but

for

> our family it was the best decision. We could finally relax and

enjoy

> our petite Pippin.

>

> Hope this helps.

>

> I hope I did not offend any non GT parents out there " consumed "

with

> total amount in. Please accept my apologies if I did.

>

> ps I love your names!

>

> Team Lapish

> Dan, Jenyfer, Tully, Pippin (RSS-3 years old in two months) & Ryker

[Guest guest]

Hi !!

I dont have any advice to add since christopher doesnt have one but

wanted to let you know you are in my thoughts and prayers!! you will

make whatever decision is the best for your beautiful daughter. some

days i wish he had one so that i didnt have to drive myself nuts on a

daily basis worrying about whether he is taking in enough and going to

gain weight!! but for now its not what is right for him and if the

time comes i know i will feel the same as you but it will be the right

thing to do!! good luck!! ((HUGS))

jodie c