g-j tube anyone?

[Penny from Tenny]

Hi all,

This is my first time on the special needs board. I guess mainly because I didn't homeschool my severely disabled son who is 26 now. We did homeschool his twin and now younger siblings.

 

Just wondering if anyone has a child with a g-j tube. Our son has had a g-tube for 3 or so years now but is having a g-j tube placed on Tuesday due to almost daily vomiting (almost 9 months now)....had a central line for a brief time. I won't give you the long story. I'm just curious if children with g-j tubes experience hunger pains because the stomach is being bypassed with the feeds? I think that for me is the hardest part to consider. I don't want him to "feel" hungry. KWIM? I'm sure I'll learn more Tuesday, but was just curious about a few things.

 

So, if you've had any experience with this I would love to hear. I guess meds getting stuck would be my next concern because it would require an ER visit. We get meds stuck in the g-tube all the time, but I can fix that without an ER visit.

 

Thanks for any input!

Blessings,

Penny

[besroma]

I don't have any personal experience, but here are links to a couple of blogs I follow:

 

http://www.prayingfornoah.com/p/noahs-story.html?m=1

 

http://prayingforparker.com/what-i-feed-my-g-tube-enhanced-kid/

[Dmmetler]

My BIL (now deceased), who had profound cerebral palsy and was on an 1 yr old level as an adult, had a G-J tube. In general, he was more content once the tube was placed, because he was getting nutrition on a regular schedule and in set amounts-it wasn't the case where he'd get part of a feed, and then vomit it up, and have stomach pains, so I don't think he was experiencing hunger as long as the schedule was followed. He finally put on some weight after the G-J was placed, when he had trouble doing so when he was still getting oral feedings.

 

I believe his medications were all formulated as liquids or in a form where capsules could be opened and mixed with a liquid, precisely to avoid clogging the tubes.

 

In general, the G-J tube made it much easier for my MIL and other family members to care for him for the last several years of his life, and while my MIL fought it initially, she said after the fact that she wished she'd gotten the tube earlier because it did improve his quality of life.

[besroma]

I don't have any personal experience with this, but here are links to a couple of blogs I follow:

 

http://www.prayingfornoah.com/p/noahs-story.html?m=1

 

http://prayingforparker.com/what-i-feed-my-g-tube-enhanced-kid/

[Penny from Tenny]

My BIL (now deceased), who had profound cerebral palsy and was on an 1 yr old level as an adult, had a G-J tube. In general, he was more content once the tube was placed, because he was getting nutrition on a regular schedule and in set amounts-it wasn't the case where he'd get part of a feed, and then vomit it up, and have stomach pains, so I don't think he was experiencing hunger as long as the schedule was followed. He finally put on some weight after the G-J was placed, when he had trouble doing so when he was still getting oral feedings.

 

I believe his medications were all formulated as liquids or in a form where capsules could be opened and mixed with a liquid, precisely to avoid clogging the tubes.

 

In general, the G-J tube made it much easier for my MIL and other family members to care for him for the last several years of his life, and while my MIL fought it initially, she said after the fact that she wished she'd gotten the tube earlier because it did improve his quality of life.

 

Thank you for sharing. Our son has profound CP also. I do believe that we don't have a choice but to get the g-j tube, and I have accepted that. If it doesn't improve the vomiting issue then we will be left with surgery which is what got us into this issue to begin with. Nobody wants to touch him with a 10-foot pole at this point. Our son's issue is that the vomiting is throwing off his seizure med levels and he has started having seizures (which were controlled), and when he has seizures he generally breaks a bone because of his osteo-necrosis. Not to mention the erosion of the esophagus. It is kind of a snowball effect. I'm glad the g-j tube improved your BIL's quality of life. I'm hoping it will help our son to have some relief from the vomiting. Time will tell.

Thanks again.

[Penny from Tenny]

I don't have any personal experience with this, but here are links to a couple of blogs I follow:

 

http://www.prayingfornoah.com/p/noahs-story.html?m=1

 

http://prayingforparker.com/what-i-feed-my-g-tube-enhanced-kid/

 

 

Oh, my. There's always someone else who has it worse. Makes me count my blessings. Especially in light of the fact that my last one was born emergency c-section due to a prolapsed cord. Wow.