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-   -   *Update first post* G tube? (http://www.diaperswappers.com/forum/showthread.php?t=1507402)

momgoddesswife 04-10-2013 06:02 AM

*Update first post* G tube?
 
Our little guys dietician and OT have both recommended to his Ped that he have a G tube put in. We have been fighting this for almost a year now and did manage to get him to gain but now he's loosing again so I can see it's kind of inevitable. He's 18.5 months and 16.7 lbs.

I know nothing about them, I have seen one but not up close his neighbor while he was in the PICU had one and I remember them having to deal with it being pulled out and getting blocked a lot. It seemed like a lot to deal with.

Just wondering if anyone is dealing with one and could educate me. :)

*Update*

We saw his pediatrician today and she agreed with his nutritionist and OT on the G Tube. She has put in the referral to the surgical team for them at the children's hospital and he will be having it done ASAP. She didn't say what type but from the bit of info she did give us it will either be the regular G Tube or a GJ Tube.

I know this is the best thing for him and I trust her 100% I can honestly say I am just a little bit nervous and overwhelmed but once I do some more research I know I will feel better.

Thank you again for all the great info everyone, it helped us so much in agreeing to this. :goodvibes:

Shaunam 04-10-2013 07:11 AM

Re: G tube?
 
DD has a tube. It's really not a huge deal. Most people I know whose kids got one after infancy said they fought it and fought it, but in the end they did it and then wonder why in the heck they didn't do it sooner! So it can be a huge relief for a lot of families.


Here is DD with a peg tube. It is a long tube that is placed in her stomach with a plastic disc about the size of a quarter.

http://i133.photobucket.com/albums/q...e/DSCN0326.jpg

Here is a picture of a button g-tube (actually that is a GJ so it has an extra port, but I couldn't find one of just her G):
http://i133.photobucket.com/albums/q...na12710014.jpg

It's low profile and when you aren't using it, it can stay hidden under his clothes. When you go to feed him, you just hook an extension to the button and either push the feed in with a syringe, or use a gravity bag or feeding pump (they will help you figure out what works best for him). Some people syringe feed straight into the button. This works if you have an adaptor for the syringe that fits right into the button.

G tubes can usually be changed at home. And if it gets pulled out, you just put it back in, or put a new one in.

Surgery is not too major and majority of the pain is gone within a few days.

We've only had one g tube infection and that was just a couple of months after it was placed. Otherwise it's not a big deal. We don't do anything extra to it. Just wash in the tub and pat dry. We put a cloth tube pad around it to keep it from getting gunky during the day.

You can feed him just about anything through the tube. You don't have to stick to formula. My DD gets a full blended diet with lots of healthy whole grains, fruits, veggies, etc. Some people like to just push some baby food along with the formula for extra nutrition. Stage 1 doesn't even have to be blended down extra. If it gets clogged you can flush it with warm water....if that doesn't work, a little coca cola usually will. I've never NOT been able to unclog a G tube (now a GJ....yeah that's a different story!).

ETA: Also, a g tube is only as permanent as it needs to be. If in a few years he no longer needs it, it can be taken out and he'll just have a small scar.

Shaunam 04-10-2013 07:27 AM

Re: G tube?
 
Here are the tube pads I make for her. If you don't sew, there are plenty of people on-line who sell them!

http://i133.photobucket.com/albums/q...g-tubepads.jpg

Here's a link to how I make her food:

https://www.youtube.com/watch?v=thL76QI9x4o

I bought a bag like this to keep her food in when we go places. It's like super perfect!

http://www.amazon.com/Skip-Hop-Lunch...+zoo+lunch+bag

http://i133.photobucket.com/albums/q...pse8adc8a3.jpg

momgoddesswife 04-10-2013 07:34 AM

Re: G tube?
 
AWESOME Oh my gosh thank you SOOOO much. You answered a ton of my questions.

I really like the idea of being able to feed him anything through it, I didn't realize that. He has multiple severe food allergies, animal protein, dairy, soy, nut & tree nut & oats. Add that to his reflux and his oral aversions and at 18 months he's only eating brown rice cereal, prunes, bananas, and hummus. It would be nice to at least be able to try more and branch out.

So there doesn't have to be a line coming from it all the time? I don't know why I thought there had to be. I know the little girl that roomed with him in the hospital had to have a pump attached to her all the time, if that only when you are on a continuous feed? I know she was on a continuous feed.

Shaunam 04-10-2013 07:53 AM

Quote:

Originally Posted by momgoddesswife (Post 16483083)
AWESOME Oh my gosh thank you SOOOO much. You answered a ton of my questions.

I really like the idea of being able to feed him anything through it, I didn't realize that. He has multiple severe food allergies, animal protein, dairy, soy, nut & tree nut & oats. Add that to his reflux and his oral aversions and at 18 months he's only eating brown rice cereal, prunes, bananas, and hummus. It would be nice to at least be able to try more and branch out.

So there doesn't have to be a line coming from it all the time? I don't know why I thought there had to be. I know the little girl that roomed with him in the hospital had to have a pump attached to her all the time, if that only when you are on a continuous feed? I know she was on a continuous feed.

Yes, continuous feeds will be hooked up the majority of the time. This is what my DD does. We still take her off for baths, quick car trips, etc. As long as she's on her pump for 20-22 hours a day she gets plenty of calories. If he doesn't need continuous feeds, he will only need to sit still while you plunge it in. ;) But even if he ever does need continuous feeds, it's not a big deal. The home pumps are very tiny and light and everything fits into a teeny backpack he can carry around. I've seen kids as young as 9 months old crawling around with their food on their back. :giggle:

One thing you'll want to ask about before hand is if they will be placing a peg tube or a button. Usually this is just based on the surgeon's preference. Some like there to be a peg tube while it heals, then switch to a button. Other go straight to a button. Buttons tend to pop out easier, which is why many doctors like to use pegs while it heals.

My DD doesn't have many allergies, but she has slow motility and many foods make that worse, including all animal foods. I recently tried fresh eggs from my mom's chickens, but she got soooo constipated! We do plant milk, nuts and seeds (sunflower seeds are a fave...they blend down nicely without being soaked first), a ton of fruits and veggies, and usually oats (but I've done all sorts of grains, including quinoa). I add 2 tbsp of healthy oils a day for an extra boost of calories.

ETA: A good blender makes ALL the difference in the world when blending food! We have a blendtec and it's the only way I can get her food to run through her pump. A regular blender just doesn't cut it. It's possible to make food thin enough to syringe in with a standard blender though.

momgoddesswife 04-10-2013 07:59 AM

Re: G tube?
 
I will definitely ask about the button of PEG thanks for that.

I think one of the biggest motivators for doing it is that his red & white blood counts are extremely low as well as his platelets, he's bruising. They are thinking he's going to need a bone marrow transplant sometime in the near future but I think his Pediatrician is worried that as he is right now, with his weight being so low, he would not be able to stand the prep for the transplant with the chemo and his immune system being so taxed. So if we can get him up some and get the feeding worked out he might have a better chance of doing better.

Well I'm less against it now. I bet I will probably be one of those people who wonders why we fought it for so long. It doesn't seem quite as daunting now.

Shaunam 04-10-2013 08:44 AM

Re: G tube?
 
:goodvibes:

There are feeding tube groups on facebook that can be very helpful. "Children with Feeding tubes" is the one I'm on. They will accept you pre-tube. ;)

Shaunam 04-10-2013 08:47 AM

Re: G tube?
 
This video shows how you can feed directly into the button:

https://www.youtube.com/watch?v=giy5NI4nVcQ

mekat 04-10-2013 09:08 AM

Re: G tube?
 
Here is a pdf that covers quite a bit. http://www.childrensmn.org/manuals/p...are/196854.pdf My son will be 9 in August and he has been tube fed his entire life due to significant GI tract problems so I am speaking from almost 9 years of experience here. To me it sounds like either your neighbor's child has complications specific to his situation or they are doing a bad job managing his medical issues.

Speaking from the perspective of a parent that has had a child's surgery have horrendous complications I can't even understand why you are still considering not doing it given your last post. The agony of sitting bedside and mentally reviewing everything that went wrong and what could have been done differently is not a place you want to be. A gastrostomy can be easily undone by just removing the gastrostomy button and letting the stomach muscles contract until it closes; this can often be done at home, a potentially fatal or life changing surgical complication can't be undone nearly so easily.

From an immunological perspective ask his immunologist about bolstering his immune system sometimes they know tricks and techniques that may work even if not considered a traditional treatment. For example; my son's immune problems (which also contributed to the surgical complication mentioned above) his immunologist indicated if we got in a tight spot they could administer IVIG infusion therapy in addition to antibiotics to boost the probability of a good outcome. Technically speaking IVIG is not a proven treatment method for my son's particular immune problems but his doctor said she has seen good results in a clinical setting following the above regimen.

Other good gastrostomy tube resources are;

Feeding Tube Awareness

Oley Foundation

momgoddesswife 04-10-2013 09:18 AM

Re: G tube?
 
It's not that we have said no to it recently we said no to it in the summer which was long before we found out about his genetic disorder, that we found out about a month ago, and before the issues with his counts. His pediatrician mentioned it while throwing ideas around at his last visit it wasn't a definite and still isn't yet.

I am just trying to do what's best for my son and research about it before I agree to it. I don't think questioning it is a bad thing, I want to know how it's going to benefit him and how it will change our lives before doing it.

They said we would get nursing care which is good and we would obviously be taught everything before him going home.


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