G-Tube questions...so many!

Allyson - posted on 04/14/2012 ( 5 moms have responded )

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My son is using a G-Tube, and he has had it since he was discharged from the NICU several weeks ago. We have had him on 3 bolus feeds during the day and a continuous feed at night at a much slower rate and we add more to it every 4 hours. At "feeding clinic" we were told to increase his feeds by an ounce every day, so we planned to give him an extra 10 mls at his three day feedings. Well, that hasn't worked. We can't get more than 5 mls at each feeding without him throwing up, so we go back down. We have for several weeks. Is that ok? He's putting on weight well, but I'm wondering if he is ever feeling full and satisfied as he grows. He doesn't seem fussy in regards to hunger, but I can't tell for sure because he has a tracheostomy, so he isn't able to vocalize his cries so I can't distinguish them apart.



Also, we are using a Kangaroo Joey pump, and sometimes there are little glitches or mistakes on our end where we gave it to him too quickly or didn't refill it on time, so we are always guessing when it comes to what to do next when those situations arise. For example: If he doesn't get enough, we try to give him more to make up for it but then it kind of gets in the way of the next feeding, and we don't want to overload him, so we just don't know what to do.



We also have forgotten in the middle of the night to put more in once or twice and wake up to realize he got less than he should have, and the guilt from that is incredible. Does anyone deal with this? I feel kind of stressed out all the time, and doctors don't really help me because they make guesses it seems too. I'd love some advice!

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Iridescent - posted on 04/22/2012

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We have 2 kids with feeding tubes, and have done every type of feed except chimney. Now they're both on bolus feeds except when hot or ill, then they get transferred to continuous or IV.

Kid 1 was on continuous for several years and slowly transitioned to bolus feeds during the day, continuous at night, then off night feeds entirely. She refluxes so bad we can no longer do night/laying feeds at all. Every change takes forever for her to adjust to. She's now only getting 10 ounces of 17 cal formula split into 3 boluses daily, but if we concentrate it any more she vomits all over.

Kid 2 has been on bolus feeds from the start, and we have 2 options with him. We're able to run them through his pump over 1 hour 4-5x/day, or we can split each in half and do them via syringe 8-10x/day. We prefer the syringe method but school uses the pump. One of his doctors wants him on continuous feeds to protect his lungs from his reflux, but his GI wants him on bolus to prevent complications from continuous (blood sugar instability, dumping syndrome, lung damage from night feeds). He tolerates different concentrations and increased rates much better than our other, but he still does struggle sometimes.

One family's doctor had suggested increasing feeds one set day each week by 1mL/hr for a continuously fed child. If you can incorporate something similar in your routine, that might be ideal. (Ex: orders are to increase by one ounce - so if he's on 12 hours continuous add 1mL/hr to that, then 3 boluses you have 18mL left and it would only be 6mL more per feed during the day). I'd also call to clarify that they want it increased that much per day - weekly is much more typical. Sometimes it helps to put a bolus of a few ounces of water in about 15-20 minutes prior to a feed as it can actually stretch the stomach to allow for more formula and better absorption with a feed - maybe that's worth trying.

Your pump really should alarm with overnight feeds. Maybe call your supplier and explain that it doesn't, and you really need it to for his safety and health since it's for night feeds.

Dena - posted on 04/17/2012

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My 5 year old daughter has had a gtube since she was 7 months old. My first question would be have you tried slowing down the feeds? My daughter has a sluggish digestive system and we give her her feeds over 1 to 2 hours. We found that she cannot handle food first thing in the morning. So that is her slowest feed. Also, we used to have a Kangaroo pump and switched to the entralite infinity. If I were you I would look into trying a different pump.

Tiffany - posted on 04/15/2012

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From six to eight months of age, Ariana would throw up everyyyything. She stayed the same weight for those couple of months and eventually lost a couple pounds. Nobody knew what to do. The acid reflux meds didnt work at all. I was getting ready to schedule her for a surgery to do a nisen. (where the tighten her stomachso itd be hard to milk to come back up) until Finally I met a doctor who said no way. Instead he converted her g-tube into a J-tube. This is where her tube bypasses het stomach and goes straight down thru her intestines, making it almost impossible to throw up. It was not a surgery, just a 20min procedue with her under anesthesia. After this procedure, Ariana was a brand new baby. Holding food down, gaining weight, and even started crawling. She had so much energy. After about four months, we converted back to the g-tube (this was easy and done in the doctors office) and Ariana was still keeping food down! I guess all her stomach needed was a little break to grow out of this acid reflux stage.

And as far as the pump, definitely call your medical supplier and ask why your pump doesn't beep when the milk is finished. It should also beep when certain errors occur, like when there is a kink in the line or when the battery is low. If the Joey pump doesn't have these features (very surprised that it wouldn't) I would ask to change to one that does. It'll make your life easier, trust me!

Allyson - posted on 04/15/2012

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No he does spit up during the bolus feeds...sorry for the misunderstanding. He mostly does during those and he has during the continuous as well. My pump DOESN'T alert me when it is empty, so even when I've set my alarm there have been weird incidents before. Thanks, though. I appreciate it. Hope Ariana continues to do well. Love that name!

Tiffany - posted on 04/14/2012

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My daughter's name is Ariana and she also has a Gtube. She's now almost two and has had it since birth. I'm not sure if I can answer any of your questions, but I'd love to give you my opinions..

My daughters pump is Enteralife Infinity. Great pump. Obviously we had some trouble in the beginning because feeding pumps in general were new to us. To make sure Ariana got all the milk she needed, I would have to set my alarm to wake me up so that I could fill up the bag BEFORE it ran out. But once the pump's sensors detect that there is no more food running thru the line, it should beep.

As far as your son gaining weight, that's great. This, as a mom, would reassure me that he is not being underfed, so you shouldn't feel guilty.

I'm surprised that your son throws up during continuous feeds and not bolus feeds. Usually

it's the other way around.

How old is your son now? During his continuous feeds, what is the rate?

And yes, doctors may not always have the right answers unfortunately. I hope this helps a little bit. It always helped me knowing that I wasn't the only mom going thru stuff like this :-)

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