Reply Hey Mom! Learn more about the Gerber Life Insurance Grow-Up Plan!
 
Thread Tools Display Modes
Old 04-13-2013, 08:58 AM   #21
luvsviola's Avatar
luvsviola
Registered Users
seller
seller
 
Join Date: Dec 2006
Location: Central Indiana
Posts: 17,103
My Mood:
Re: *Update first post* G tube?

We just told our daughter (who was 3 at the time) that Ledger needed a special tube so that he could grow big and strong. He was on continuous feeds 22 hours a day, so she knew she wasn't allowed to pick him up. Beyond that, he can do just about anything a normal kid can do. He will learn really fast what is comfy and what is not.

There is a group called Tubie Friends that makes tubie stuffed animals for kiddos. I would suggest ordering one. DS loves his "tubie bear."
http://www.tubiefriends.com/

AMT makes a silicone clamp that helps pin the extension to clothing if your kiddo is on a pump. We use one and a diaper pin to pin it to DS's pants. In 4 year years, he has never once pulled the tube out of his belly when it was properly pinned (he did twice for his bio parents, but that is another long story). DS doesn't like to wear the backpack, and he drags it behind him by the tube/carries it around most of the time. This makes that possible.

Advertisement

__________________
Kristen
Middle school teacher by day, super mom by night
Mommy to The Boss~2007, The Energizer Bunny~2009, and The Princess~2011
My kids are no longer in diapers, but somehow, my computer keeps finding its way back here...

Last edited by luvsviola; 04-13-2013 at 09:19 AM.
luvsviola is offline   Reply With Quote
Old 04-13-2013, 09:10 AM   #22
momgoddesswife's Avatar
momgoddesswife
Registered Users
seller
 
Join Date: Dec 2012
Posts: 346
My Mood:
Re: *Update first post* G tube?

Quote:
Originally Posted by luvsviola View Post
We just told our daughter (who was 3 at the time) that Ledger needed a special tube so that he could grow big and strong. He was on continuous feeds 22 hours a day, so she knew she wasn't allowed to pick him up. Beyond that, he can do just about anything a normal kid can do. He will learn really fast what is comfy and what is not.

There is a group called Tubie Friends that makes tubie stuffed animals for kiddos. I would suggest ordering one. DS loves his "tubie bear."
http://www.tubiefriends.com/
I think it's the picking up I am most worried about right now. They LOVE to grab him under his arms and carry him to his playmat etc. We will just have to say not picking him up, they will eventually understand it will just take a little while.

I found the site http://www.feedingtubeawareness.org and you are right we definitely have a learning curve to get used to here.

They said the surgery would be less than 1hr and that he will be in for 2-3 days after just so it can heal a little and we can learn how to care for him.

I think I will definitely get one of those bears once we know what type of tube he will have.
__________________
Aim Vegan, BWing, mama to our 26 wk Micro Preemie miracle Cazzy. Kicking Fanconi Anemia's Butt NEGU

"It's the little details that are vital. Little things make big things happen.~John Wooden"
ISO: WCW cuffed longies or bloomers size Small
momgoddesswife is offline   Reply With Quote
Old 04-13-2013, 03:53 PM   #23
luvsviola's Avatar
luvsviola
Registered Users
seller
seller
 
Join Date: Dec 2006
Location: Central Indiana
Posts: 17,103
My Mood:
Re: *Update first post* G tube?

The kind of tube doesn't really matter much. Our bear is a G, and DS has a GJ. The ports are almost the same. The G-J just has two holes instead of one. It will help the older kids too...they can see what it is like to hook your son up, and play with a port without messing with his.

The port isn't as delicate as it seems. My son plays soccer, goes swimming, goes to preschool, and does all the "normal" little boy things. He is a rough and tumble as it comes--he is sensory seeking and is NUTS. The tube doesn't affect it at all. He will very quickly figure out what hurts and avoid it on his own.
__________________
Kristen
Middle school teacher by day, super mom by night
Mommy to The Boss~2007, The Energizer Bunny~2009, and The Princess~2011
My kids are no longer in diapers, but somehow, my computer keeps finding its way back here...
luvsviola is offline   Reply With Quote
Old 04-16-2013, 05:50 AM   #24
momgoddesswife's Avatar
momgoddesswife
Registered Users
seller
 
Join Date: Dec 2012
Posts: 346
My Mood:
Re: *Update first post* G tube?

What type of diaper bag would you recommend to help carry around the stuff we will need?

I have been looking on the Feeding Tube Awareness website and see that they have a couple WAHM's who make backpacks for the kids to carry, I'm just wondering if we would actually wear it or not. The Oley foundation recommends a Camelbak backpack that you take the bladder out, this allows you to feed the tube through the area where the tube would be for the bladder, it does seem handy.

I just got a sewing machine too so I made a couple G Tube Pads for him I could see if I could make him a little backpack myself.
__________________
Aim Vegan, BWing, mama to our 26 wk Micro Preemie miracle Cazzy. Kicking Fanconi Anemia's Butt NEGU

"It's the little details that are vital. Little things make big things happen.~John Wooden"
ISO: WCW cuffed longies or bloomers size Small
momgoddesswife is offline   Reply With Quote
Old 04-16-2013, 06:07 AM   #25
luvsviola's Avatar
luvsviola
Registered Users
seller
seller
 
Join Date: Dec 2006
Location: Central Indiana
Posts: 17,103
My Mood:
Re: *Update first post* G tube?

Your pump will come with a backpack. My son just wears the one it comes with. Ask for the Super Mini backpack if you get a choice. It is much smaller than the mini and is appropriate for a toddler. The mini is more appropriate for an upper elementary/teen.

I just use a normal diaper bag. I have a Skip Hop Dash. I fill DS's pack up with formula before we leave the house. 500 mL will last him 6 hours, so I don't generally have to mess with his pump while we are out. We keep a tube rescue kit in case he pulls it out (he never does) in each car so we always have it with us. If we are out for the whole day, I used to throw a can of formula and an empty bottle in the bag to make formula while we are out. If you are just dumping formula in (called bolus--not using a pump), I just put the bolus syringe and an extension in a gallon size ziplock and throw it in the diaper bag.

Now, my son is on Peptamin Jr, which is ready-to-feed in juice box size containers, so it makes dealing with the formula much easier.

It really doesn't require a lot of extra stuff to keep with you.

My son doesn't need G tube pads. In the very beginning, we used a split gauze (homecare provided) til he healed. IME, if your tube fits right, you shouldn't have leakage.
__________________
Kristen
Middle school teacher by day, super mom by night
Mommy to The Boss~2007, The Energizer Bunny~2009, and The Princess~2011
My kids are no longer in diapers, but somehow, my computer keeps finding its way back here...

Last edited by luvsviola; 04-16-2013 at 06:09 AM.
luvsviola is offline   Reply With Quote
Old 04-26-2013, 11:40 PM   #26
mhschool6's Avatar
mhschool6
Registered Users
seller
 
Join Date: Aug 2009
Location: Florida
Posts: 492
My Mood:
Re: *Update first post* G tube?

We love our super mini backpacks. They are too cute! How is your little man doing?
__________________
Hannah- married to M for 14 yrs: Mama of 7 amazing children! Ages 13yrs down to 23mos And expecting #8 January 2014!!!
mhschool6 is offline   Reply With Quote
Old 04-27-2013, 07:40 AM   #27
momgoddesswife's Avatar
momgoddesswife
Registered Users
seller
 
Join Date: Dec 2012
Posts: 346
My Mood:
Re: *Update first post* G tube?

Quote:
Originally Posted by mhschool6 View Post
We love our super mini backpacks. They are too cute! How is your little man doing?
He had an appointment with his OT & Dietician this week and he has lost another just over a 1lb in a week and a half. So I called his pediatrician to check on the referral she made to the GI at the Children's Hospital and she called the GI doc and talked to him. He decided it was best that she make the referral directly to surgery and we get the Tube ASAP. So they sent that on Thursday, they are hoping we hear sometime this coming week.

He's just so out of sorts and not himself, he has no energy and I'm worried about him.

Good news is I put the info in for a Tubie Friend, THANK YOU SO MUCH, for suggesting that and we got his Tubie Friend in the mail on Thursday. The older kids LOVE him and have had tons of questions, we have been slowly teaching them about how Casper will eat differently. Casper also loves to cuddle his bear.

I managed to find a tutorial on how to convert a Skip Hop Zoo pack into a backpack for a feeding tube so I snagged one on Ebay and I'm hoping that will work for him. Now I am just looking into a diaper bag for me. I am thinking a backpack one would be good also so we can have hands free.
__________________
Aim Vegan, BWing, mama to our 26 wk Micro Preemie miracle Cazzy. Kicking Fanconi Anemia's Butt NEGU

"It's the little details that are vital. Little things make big things happen.~John Wooden"
ISO: WCW cuffed longies or bloomers size Small
momgoddesswife is offline   Reply With Quote
Old 04-28-2013, 10:26 AM   #28
pinktoes
Registered Users
seller
seller
 
Join Date: Mar 2011
Posts: 1,508
My Mood:
Re: *Update first post* G tube?

You saw the Speech Pathologist right? They are often more specialized on feeding issues than OTs.
pinktoes is offline   Reply With Quote
Old 04-30-2013, 06:15 PM   #29
seanne123
Registered Users
 
Join Date: Apr 2013
Posts: 6
Re: *Update first post* G tube?

My youngest came home with a G button - probably one of the best decisions we made. Dealing with an NG - feeding tube down the nose would have been more than difficult with the other kiddos.
Sister, then 2, tried pushing her sippy cup into her tummy to drink her milk after watching the tube feeding. Eventually the older kids could run the pump as well as we did.
We had lots of exposure to other kids through church and family. Kids would stop to look at the tube feeding. We explained that's how she drinks her milk and most were ok with just that.
Thankfully, after some feeding therapy, she discovered the joy of eating. We took the button out last summer at age 2 1/2.
seanne123 is offline   Reply With Quote
Old 04-30-2013, 06:25 PM   #30
momgoddesswife's Avatar
momgoddesswife
Registered Users
seller
 
Join Date: Dec 2012
Posts: 346
My Mood:
Re: *Update first post* G tube?

Quote:
Originally Posted by pinktoes View Post
You saw the Speech Pathologist right? They are often more specialized on feeding issues than OTs.
Yes, he's been seeing a SLP for a couple months now. He actually see's 2 OT's one for feeding and one for play/motor etc. The OT for feeding is amazing I love her to bits she's been so great.

We just got the appointment with the surgeon it's May 13th and then he will have the placement very shortly after.

The Tubie Friend has been very helpful with exposing the kids to it and preparing them some. We have answered questions on a as needed basis basically and they seem content with the answer "Cazzy just eats differently". Kids they are so simple sometimes.
__________________
Aim Vegan, BWing, mama to our 26 wk Micro Preemie miracle Cazzy. Kicking Fanconi Anemia's Butt NEGU

"It's the little details that are vital. Little things make big things happen.~John Wooden"
ISO: WCW cuffed longies or bloomers size Small
momgoddesswife is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

Copyright 2005 - 2014 Escalate Media. All Rights Reserved.