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Gtube kids... Share your experiences

Posted by on May. 29, 2013 at 5:01 PM
  • 9 Replies

Today, after spending 16 days in the PICU for pneumonia, they performed a swallow study on my daughter. She is now well enough to come home, but they wanted to make sure she wasn't aspirating.

We found that she was aspirating liquids, even when thickened to nectar and honey thickness.

Since she is now underweight (44lbs and tall at age ten), and has issues with intake, even without giving all of her liquids to her in pudding thickness, they strongly suggested Gtube placement. The surgery would be done within the next two weeks, and tomorrow, when she comes home, we'll have a temporary NG tub.

What are your experiences with the placement? How was the recovery? How long were they in the hospital following surgery?

What types of feeds are you doing?

If a child starts out with a continuous feeds while healing, how long did you have to wait before you could begin direct feeds or bolus feeds?

If you had to have the tube placed due to dysphagia, was your child upset about not being able to drink by mouth?

My daughter will be able to eat purees by mouth for pleasure, but her comfort of her nuby cup and a drink will be gone, and that breaks my heart.

She has Rett Syndrome, so Gtubes are common with this disorder.


"What is a man, if chief good, and market of his time be but to sleep and feed? A beast, no more."  Hamlet

by on May. 29, 2013 at 5:01 PM
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Replies (1-9):
mandee1503
by Amanda on May. 29, 2013 at 5:24 PM
When we replaced the tube back in jan we were there for just 1 night. We mostly use it for medicine and for the few extra calories Jacob lacks during the day. The healing time was short. We used it for medicine and formula the next day because he doesn't like to eat when we are in the hospital.
Mipsy
by Chelle on May. 29, 2013 at 5:45 PM

*hugs* My son outgrew dysphagia, however he has small bouts with it here and there. His isn't typical, his is due to muscle fatigue. 


We just got a gtube last May, seriously it has been the best thing we ever did. We got it because our son stopped eating and drinking due to motility issues. Last yr he was only 33lbs and 36" and now he is 43lbs and 43". In just one yr he grew that much and he is much healthier now than he was then. 

The first 12 hours after placement were the worst for us, they kept morphine on hand for him though and he only needed 2 doses and after that he didn't even need tylenol for pain. We went home the next day after surgery. We are on continuous feeds 24hrs a day and have been since last July, but that is due to motility issues. We started on bolus feeds and had to go to continuous. I don't know about how long you have to wait to try bolus feeds. My son takes elecae jr through his tube due to food allergies and its much easier to digest. We also give all but 1 med via btube as well. Good luck! :)

JHampton9809
by on May. 29, 2013 at 5:45 PM

My 3 year old will be having a G-tube placed in June. HE has had an NG tube for almost 8 weeks now. We were told he will spend 1-2 nights in the hospital after and then give a couple weeks and he will be healed. 

Cymbeline
by on May. 29, 2013 at 5:50 PM

Is it possible to go on trips and outings with the continuous feeds? I'd imagine there's a portable system. While I'm familiar with all of her other treatments, this isn't something I had anticipated so soon.

We like to take a yearly camping trip, and I'm hoping it's possible. It's at a family park that is completely accessible, and we will have electricity at the site. She really loves it.

I am also worried about pain management after the surgery. She is completely non verbal, so it will be hard to gauge exactly how much she'll need.

Thank you so much for your answer, and for sharing your son's story.

Quoting Mipsy:

*hugs* My son outgrew dysphagia, however he has small bouts with it here and there. His isn't typical, his is due to muscle fatigue. 


We just got a gtube last May, seriously it has been the best thing we ever did. We got it because our son stopped eating and drinking due to motility issues. Last yr he was only 33lbs and 36" and now he is 43lbs and 43". In just one yr he grew that much and he is much healthier now than he was then. 

The first 12 hours after placement were the worst for us, they kept morphine on hand for him though and he only needed 2 doses and after that he didn't even need tylenol for pain. We went home the next day after surgery. We are on continuous feeds 24hrs a day and have been since last July, but that is due to motility issues. We started on bolus feeds and had to go to continuous. I don't know about how long you have to wait to try bolus feeds. My son takes elecae jr through his tube due to food allergies and its much easier to digest. We also give all but 1 med via btube as well. Good luck! :)


"What is a man, if chief good, and market of his time be but to sleep and feed? A beast, no more."  Hamlet

Mipsy
by Chelle on May. 29, 2013 at 6:36 PM
*hugs* yes, my son goes everywhere with his pump including school. He has the zevex entralite infinity pump (or something like that, lol). It weighs only 2lbs and is meant to be portable. It has a 24hr battery life and doesn't require maintenance (although if its a used pump being rented from a home health company, it may require maintenance). I highly recommend refusing the Kangaroo Joey pump. It is NOT meant to be portable, home health companies try to say otherwise but they are lying. It clearly states in the Joey user manual it must be in an upright position on a flat service or IV pole. The zevex can be used in any position and has a specially designed backpack it comes with.

And as long as the camping area has a place you can charge the pump, you can take it. I believe it takes 6hrs to fully charge the pump. We charge it overnight.

You know your dd best, so if at any time you feel she is in pain, sand they medicate her. The only issue we had was our Dr didn't write the morphine script after surgery and my son was in pain for an hour. But that was a hospital issue. Some may go home with prescription strength Tylenol for pain, it really varies by child. Also you do not need to go home asap. If you do not feel comfortable, let the hospital know and request staying and asking for more help and guidance if needed in caring for her tube. It's overwhelming at first but I promise it becomes second nature.

Look for feeding tube awareness on facebook. They are an awesome group. Also if you want, look for tubie friends. They make stuffed animals with feeding tubes in them for kids to have for free. You can request one for your dd.

I also suggest keeping gauze around the tube site or gtube pads. You can buy gtube pads from various moms who make them for children. Gauze should be provided by the home health company. It keeps the area clean and helps keep granulation tissue at bay.


Quoting Cymbeline:

Is it possible to go on trips and outings with the continuous feeds? I'd imagine there's a portable system. While I'm familiar with all of her other treatments, this isn't something I had anticipated so soon.

We like to take a yearly camping trip, and I'm hoping it's possible. It's at a family park that is completely accessible, and we will have electricity at the site. She really loves it.

I am also worried about pain management after the surgery. She is completely non verbal, so it will be hard to gauge exactly how much she'll need.

Thank you so much for your answer, and for sharing your son's story.

Quoting Mipsy:

*hugs* My son outgrew dysphagia, however he has small bouts with it here and there. His isn't typical, his is due to muscle fatigue. 


We just got a gtube last May, seriously it has been the best thing we ever did. We got it because our son stopped eating and drinking due to motility issues. Last yr he was only 33lbs and 36" and now he is 43lbs and 43". In just one yr he grew that much and he is much healthier now than he was then. 

The first 12 hours after placement were the worst for us, they kept morphine on hand for him though and he only needed 2 doses and after that he didn't even need tylenol for pain. We went home the next day after surgery. We are on continuous feeds 24hrs a day and have been since last July, but that is due to motility issues. We started on bolus feeds and had to go to continuous. I don't know about how long you have to wait to try bolus feeds. My son takes elecae jr through his tube due to food allergies and its much easier to digest. We also give all but 1 med via btube as well. Good luck! :)


darbyakeep45
by Darby on May. 29, 2013 at 6:39 PM

My son is 4.5 years old and he's had his g-tube for almost 3 years.  He was inpatient for almost a week after his g-tube surgery.  I was able to begin bolus feeds within a week or so after getting home.  I typically did continuous feeds at that point though.  Now, I only do continuous feeds at night and bolus feeds of water during the day along with meds.

Cymbeline
by on May. 29, 2013 at 7:23 PM

Thank you so much!

I am writing this down and I'll take it with me tomorrow when I talk to the case manager at the hospital. You've been such a big help. I really appreciate it.

Quoting Mipsy:

*hugs* yes, my son goes everywhere with his pump including school. He has the zevex entralite infinity pump (or something like that, lol). It weighs only 2lbs and is meant to be portable. It has a 24hr battery life and doesn't require maintenance (although if its a used pump being rented from a home health company, it may require maintenance). I highly recommend refusing the Kangaroo Joey pump. It is NOT meant to be portable, home health companies try to say otherwise but they are lying. It clearly states in the Joey user manual it must be in an upright position on a flat service or IV pole. The zevex can be used in any position and has a specially designed backpack it comes with.

And as long as the camping area has a place you can charge the pump, you can take it. I believe it takes 6hrs to fully charge the pump. We charge it overnight.

You know your dd best, so if at any time you feel she is in pain, sand they medicate her. The only issue we had was our Dr didn't write the morphine script after surgery and my son was in pain for an hour. But that was a hospital issue. Some may go home with prescription strength Tylenol for pain, it really varies by child. Also you do not need to go home asap. If you do not feel comfortable, let the hospital know and request staying and asking for more help and guidance if needed in caring for her tube. It's overwhelming at first but I promise it becomes second nature.

Look for feeding tube awareness on facebook. They are an awesome group. Also if you want, look for tubie friends. They make stuffed animals with feeding tubes in them for kids to have for free. You can request one for your dd.

I also suggest keeping gauze around the tube site or gtube pads. You can buy gtube pads from various moms who make them for children. Gauze should be provided by the home health company. It keeps the area clean and helps keep granulation tissue at bay.

"What is a man, if chief good, and market of his time be but to sleep and feed? A beast, no more."  Hamlet

Cymbeline
by on May. 30, 2013 at 9:30 PM

They were able to get her in today for surgery, and she had it placed without a problem. Since she did not have reflux, as they originally suspected, it was just a tube placement. She should be coming home tomorrow, which is great, since tomorrow will be day 18 in the PICU. I miss my bug!

This was her right after surgery. She loves to fold in half, and came back from the OR already in a ball. Yes, that's her foot up by her face. ;) I don't normally like to share hospital pics, but her position was amusing. They allowed her to stay like this for a while.


Thank you all so much for sharing your experiences and advice.

Cymbeline
by on Jun. 1, 2013 at 5:08 PM

I had a feeling that was too good to be true. I must watch who I ask about a discharge date. It seem as if she's coming home Monday. :/ I'm trying to be patient. I want her home, but I do want her to come home safely.

Thanks again, everyone.

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