Re: G-Tube

[Guest guest]

In a message dated 5/30/00 2:55:01 PM Pacific Daylight Time,

egroups writes:

<< How long does a child have to do the G-tube? >>

Donna:

had respiratory prob's AND reflux, so he had his for about 5 yrs., but

don't let that discourage you! had lots of feeding and swallowing

issues and even when we gave foods orally to introduce him to " normal "

feedings it still was not enough for the g-tube to be removed....he had to

take in substantial amounts before the g-tube was eventually

removed...technically, for the reflux prob, which he outgrew, he could've had

the g-tube removed when he was two (had g-tube put in at 3 1/2 wks.!) but

because of all the other issues, we left it in until he was almost 5!!!!

Hang in there.....sometimes, I wish he still had it....makes it easier for

the med's (liquid) to go down.....you don't have to fight with them to take

it!!

[Guest guest]

Hey my name is and my daughter has sma type 1. When she got

admitted in the hospital with phneumonia they decided to do a trach and g tube.

You made the right decision she was 11 pounds when she went in cause she

couldn't swallow and now in only a few months she is a little over 17 pounds. It

is a whole lot easier for her to get her nourishment. She doesn't aspirate when

she's trying to eat anymore, either. Also you can always let him taste test I

give my daughter suckers all the time and she loves it

Berrier <babyjakeberrier@...> wrote:

Today we decided to have a g-tube placed in . They did 2 swallow

studies in the past 4 days and both showed he was aspirating some. We

decided, along with his doctors, that this would be the best way for him to

receive the nutrition he needs. It was a tough decision; I hate seeing my

beautiful 3-month old baby with a Mic-Key button hanging out of him. I know

it's for the best in the long run, but I am just having a hard time dealing

right now. I think is taking it better than I am! He is such a strong

little man! We just found out last week about 's SMA diagnosis and I

just didn't think we would have to make a decision like this so soon. If

anyone has any advice on how to deal better with this, it would be great to

talk to you! This feels like a good place to talk. Also, if there is anyone

else from NC, triad area specifically, please let us know. It would be nice

to meet someone else like Jake!

[Guest guest]

We're not in the triad area now, but we still have a house there ;0) It's rental

property currently, so I'm sure we'll have to come into town eventually.

I know of several families who are relatively close to you although the first 2

that come to mind have children who have type 2.

There's really no way that anyone can make you feel better about all of this. I

can tell you that you will get used to the mic-key and you will come to LOVE it.

I have a younger unaffected daughter and there have been many many times when

I've wished that she had a mic-key as well. I swear that all toddlers should

definitely come equipped *LOL*

Over time you'll see that there are many different paths that you can take when

it comes to caring for a child with SMA. No matter which path you choose, there

will be people here on this chat and on SMA Support guestbook and chat who will

listen without judgement and provide the support that you need.

Out of curiosity, which doctors are you seeing? When we were there, h's

pulmonologist was Dr. Pierre Barker at Chapel Hill. He, at that time, seemed to

understand and be willing to work with the non-invasive ventilation protocols.

If you are interested in NIV or any other breathing support I'd be more than

happy to talk with you about the three basic options or any other.

Love and Hugs

Jeni

G-tube

Today we decided to have a g-tube placed in . They did 2 swallow

studies in the past 4 days and both showed he was aspirating some. We

decided, along with his doctors, that this would be the best way for him to

receive the nutrition he needs. It was a tough decision; I hate seeing my

beautiful 3-month old baby with a Mic-Key button hanging out of him. I know

it's for the best in the long run, but I am just having a hard time dealing

right now. I think is taking it better than I am! He is such a strong

little man! We just found out last week about 's SMA diagnosis and I

just didn't think we would have to make a decision like this so soon. If

anyone has any advice on how to deal better with this, it would be great to

talk to you! This feels like a good place to talk. Also, if there is anyone

else from NC, triad area specifically, please let us know. It would be nice

to meet someone else like Jake!

[Guest guest]

We are seeing Dr. and Dr. Pittman now at Chapel Hill. We were seeing

Dr. Mulibach and Dr. Ramanathan when Jake first arrived and was in the PICU.

They too are very open to non-invasive means of Jake's respiratory support.

Thankfully, he has been breathing room air now for almost a week and did

great during his surgery last night without much oxygen in recovery. So

hopefully it will be a while before we decide on that! I have a 1 year old

and 4 year old niece and nephew so I know what you mean about the mic-key

for every kid! We know we made the right decision, it's just coming to terms

with it and not second guessing myself all the time! Thanks for the great

advice!

On Dec 21, 2007 3:04 AM, Jenifer Woody <mom2armybratz@...> wrote:

> We're not in the triad area now, but we still have a house there ;0)

> It's rental property currently, so I'm sure we'll have to come into town

> eventually.

> I know of several families who are relatively close to you although the

> first 2 that come to mind have children who have type 2.

> There's really no way that anyone can make you feel better about all of

> this. I can tell you that you will get used to the mic-key and you will come

> to LOVE it. I have a younger unaffected daughter and there have been many

> many times when I've wished that she had a mic-key as well. I swear that all

> toddlers should definitely come equipped *LOL*

> Over time you'll see that there are many different paths that you can take

> when it comes to caring for a child with SMA. No matter which path you

> choose, there will be people here on this chat and on SMA Support guestbook

> and chat who will listen without judgement and provide the support that you

> need.

> Out of curiosity, which doctors are you seeing? When we were there,

> h's pulmonologist was Dr. Pierre Barker at Chapel Hill. He, at that

> time, seemed to understand and be willing to work with the non-invasive

> ventilation protocols. If you are interested in NIV or any other breathing

> support I'd be more than happy to talk with you about the three basic

> options or any other.

>

> Love and Hugs

> Jeni

>

>

>

> G-tube

>

> Today we decided to have a g-tube placed in . They did 2 swallow

> studies in the past 4 days and both showed he was aspirating some. We

> decided, along with his doctors, that this would be the best way for him

> to

> receive the nutrition he needs. It was a tough decision; I hate seeing my

> beautiful 3-month old baby with a Mic-Key button hanging out of him. I

> know

> it's for the best in the long run, but I am just having a hard time

> dealing

> right now. I think is taking it better than I am! He is such a

> strong

> little man! We just found out last week about 's SMA diagnosis and I

> just didn't think we would have to make a decision like this so soon. If

> anyone has any advice on how to deal better with this, it would be great

> to

> talk to you! This feels like a good place to talk. Also, if there is

> anyone

> else from NC, triad area specifically, please let us know. It would be

> nice

> to meet someone else like Jake!

>

>

[Guest guest]

did a great job at explaining what a G tube is. I have a G/J

(gastic/jejunum) tube which has to be placed in IR (interventional radiology).

The

only difference from the G tube is I have 2 ports, and one port is to a tube

that is placed in my jejunum AKA duodenum. I get feedings and meds thru the

J port so that I bypass my stomach. I have multiple GI issues, and I do

better when my feedings and meds go thru the J. If you have any ?'s, just ask.

Kimi

" We come to love not by finding a perfect person but by learning to see an

imperfect person perfectly " - San Keen

In a message dated 3/27/2009 5:59:48 P.M. Eastern Daylight Time,

rdubin86@... writes:

Hi, G-tubes provide extra nutriention at night or also during the day. It

inserts into the stomach about an inch or so and has a balloon filled with

water to hold it in. Its important to be careful not to get it caught and

pulled

out. If it comes out it needs to be reinserted because the hole can close up

quickly. Some doctors recommend an amino acid based formula and others do

not. Sometimes you have to try different formulas until you find the right one

that doesn't bother the stomach. They usually get changed between every three

to six months depending on the doctor. Most can be change at home by just

deflating the balloon and inserting a new tube. Be careful of infection and

keep

it clean. Don't be overwhelmed, its pretty easy to work with. I also use

mine to put medicines in so I don't have to taste the awful medicine. That's

one

benefit I enjoy. Feel free to e-mail me with any specific questions.

>

> my 16 year old daughter will be getting a g-tube in 2 weeks. can anyone

tell me how the feedings work and what type of formulas are used. any other

information you can give me on this topic will be very helpful. thanks.

> kathy

>

>

>

>

> [Non-text portions of this message have been removed]

>

**************Feeling the pinch at the grocery store? Make meals for Under

$10. (http://food.aol.com/frugal-feasts?ncid=emlcntusfood00000002)

[Guest guest]

Hi, G-tubes provide extra nutriention at night or also during the day. It

inserts into the stomach about an inch or so and has a balloon filled with water

to hold it in. Its important to be careful not to get it caught and pulled out.

If it comes out it needs to be reinserted because the hole can close up quickly.

Some doctors recommend an amino acid based formula and others do not. Sometimes

you have to try different formulas until you find the right one that doesn't

bother the stomach. They usually get changed between every three to six months

depending on the doctor. Most can be change at home by just deflating the

balloon and inserting a new tube. Be careful of infection and keep it clean.

Don't be overwhelmed, its pretty easy to work with. I also use mine to put

medicines in so I don't have to taste the awful medicine. That's one benefit I

enjoy. Feel free to e-mail me with any specific questions.

>

> my 16 year old daughter will be getting a g-tube in 2 weeks.  can anyone tell

me how the feedings work and what type of formulas are used.  any other

information you can give me on this topic will be very helpful.  thanks.

> kathy

>

>

>

>

>

[Guest guest]

With Taleah there were times when she needed the feeding given really slowly

to tolerate it. During that period we would give it over an hour or hour

and a half. Sometimes it was just easier to do a continuous feed rather

than deal with hooking it up and taking it down. It didn't last forever so

we were able to slowly cut down the amount of time until we were back to

gravity feeds.

My Tabitha (19 months old) has never tolerated gravity feeds, she gags if we

just pour the food in. But slowing her feed down so that it's given over 30

minutes or so has solved that problem.

On Wed, May 20, 2009 at 5:28 AM, Kathy Maloney <kitty72470@...> wrote:

>

>

> My daughter has had her g-tube for about 6 weeks now. The first two weeks,

> the feedings went fine. Since then, she has been having bouts of naseau

> while having a feeding. It is not happening every time and starts shortly

> after we begin the feeding. We then stop the feeding and try again in a few

> hours. Can anyone shed a little light on this situation for us?

> Thanks,

> Kathy

>

>

[Guest guest]

I still get that and I've had one for 14 years I just ignore it now

~Allegra Keys

On May 20, 2009, at 4:28 AM, Kathy Maloney <kitty72470@...> wrote:

My daughter has had her g-tube for about 6 weeks now. The first two weeks, the

feedings went fine. Since then, she has been having bouts of naseau while

having a feeding. It is not happening every time and starts shortly after we

begin the feeding. We then stop the feeding and try again in a few hours. Can

anyone shed a little light on this situation for us?

Thanks,

Kathy

[Guest guest]

My daughter started at 10ml/hour and took a long time (may weeks) to increase to

60ml/hour.  She only gets feeling during the night during sleeping. She did

feel nausea in the morning at the beginning.  Now she only feel nausea

occasionally after 5yrs on g-tube.  

-Shirley

--- On

Wed, 5/20/09, Kathy Maloney <kitty72470@...> wrote:

From: Kathy Maloney <kitty72470@...>

Subject: g-tube

Date: Wednesday, May 20, 2009, 7:28 AM

My daughter has had her g-tube for about 6 weeks now.  The first two weeks, the

feedings went fine.  Since then, she has been having bouts of naseau while

having a feeding.  It is not happening every time and starts shortly after we

begin the feeding.  We then stop the feeding and try again in a few hours. Can

anyone shed a little light on this situation for us?

Thanks,

Kathy

[Guest guest]

Hi Kathy,

ne (12 yrs old, type 2), has had her g-tube for 7 years. When she was

younger, she could never tolerate bolus feeds. She was always on a continous

feed over about 12-18 hours. Even now, she does not like the feelings she

gets from bolus feeds and prefers to be on the feeding pump throughout the

day.

Suzanne

Jesus said, ' " I tell you the truth, when you refused to help the least of

these, my brothers and sisters, you were refusing to help Me. " 25:45

<><

What's Up With ne???: www.our-sma-angels.com/neRose

On Wed, May 20, 2009 at 7:28 AM, Kathy Maloney <kitty72470@...> wrote:

>

>

> My daughter has had her g-tube for about 6 weeks now. The first two weeks,

> the feedings went fine. Since then, she has been having bouts of naseau

> while having a feeding. It is not happening every time and starts shortly

> after we begin the feeding. We then stop the feeding and try again in a few

> hours. Can anyone shed a little light on this situation for us?

> Thanks,

> Kathy

>

>

[Guest guest]

My first question would be where exactly is the G tube located -- the pouch vs

the reminant stomach? Our surgeons prefer the reminant stomach when a tube is

placed shortly post-op (following a stricture or leak) but I really don't know

where they would prefer to place a tube on a patient 1 year post-op.

>

> Hello-

> I need some help figuring bolus feedings for new g-tube (s/p RNY 1 year). I

don't know what kind of formula to use, how to figure feedings, or what I should

look at in order to determine these things. It's been a long time since I've had

to do this. Can someone help me please?

>

> Thanks,

> Lovisa, RD, CD

>