Tube fed kids

[Lindsay1234]

Can we have a tube fed thread?

dd2 (almost 4 months old) got the MicKey button today. Theres no tube hanging off her anymore!: Shes been tube fed for 7 weeks now.

DH was in the room for the switch but I had to leave. I heard her crying from SO far away which is bittersweet because she normally doesn't have a voice because of the ventilator.

Its going to take some getting used to. I dont understand burping. When I open the line, bubbles just go in, how am I supposed to be burping her, by hitting her back like normal?

Thanks guys!

[MotherWhimsey]

you can do it the normal way or you can just attach a syringe without the stopper in and hold it about level with her chest and stuff will come out and if there is air in there, that will come out too.

We've been tube feeding for 2.5 years now and it just seems normal now. There are annoying parts (like leaks and tangles) but the rest is no problem at all. You figure out your own way of doing everything and get in a groove.

My son has a Mic-Key long GJ tube. So we have the dangly bit, but he prefers that to the GJ button. I really loved when we had a mic-key G button cause it was so easy to change ourselves. That gets easier too. Just use lots of lube.

[pixiekisses]

Our little miss cotton ball button has a GJ button tube.
What one can also do re. the burping is putting in a syringe with the stopper and aspirate. The you get the air out, and you just stop when food comes in the syringe. Then you take the syringe off, get the air out of it by holding it tip up and pushing the stopper, and once it's just food/stomach goo left, you put it back.
We learned that at the hospital, and used to do it with the Gtube before we had the farrell bag.

[Earth Momma]

congrats!! this makes life a little easier!
the micKey should come with a vent tube. just to give you a heads up (because I panicked the first time this happened) the button can come out.... if the stomach acids wear a hole in the bulb or when there are more active it can get pulled out. Did your Dr suggest checking it weekly (the amount of saline) or give you any other maintenance info?? let me know if I can help! we always have a back up tube incase and I log the new tube date in DS3's medical records book.

[Lindsay1234]

The button popped out 2 weeks after we got it!!!

My daughter grabbed scissors, I emptied the feed bag and cut a length of tubing and DH slid the tubing in (Mic-key wouldnt go back in for some reason). Taped it and headed to the ER! The tube fell out when she sneezed on the way (its 2 miles away) and the triage nurse refused to touch it and put it back in even after we told him that she was 100% tube fed!

We kept saying "this needs to be in NOW" but neither DH or I wanted to do it again in the disgusting triage. He kept saying "Thats Peds job" and "were waiting for Peds to have a bed". It took an hour. By the time we saw the Ped docs they could only put in a size 10 french catheter because they didnt have a mic key AND the hole had started closing. They DID give us an extra catha nd tons of lube just in case.

Went in the next week to get another MicKey put in and the Peds Surgery head nurse said she was going to use dd2 and file a formal complaint against the triage nurse/ER for disregarding us!

So...

We are now comfortable inserting and removing a mickey and we have extras on hand! lol

It feels so natural to me now, I didnt think it would.

I am having a problem with her getting tangled up a little and pulling on her cord, shes so curious and its SO hot here still, I hate to clothe her! Next week it will be cooler and I can start putting onesies on her.

[MotherWhimsey]

we went through a phase where Linden would pull his button out every week balloon and all. Luckily he had a g-tube then, not a GJ, so I could replace it. I just popped the same one back in unless the balloon broke. It's so important to know how to put it back in so you don't ever have to do the whole ER thinga again because they really don't deal with them.

[anj_rn]

We have both an extra button and a 14 fr. foley catheter at home to put in, should our little angela pull out her mic key (she pulled out her mallecot tube before we changed her to a button). The tube to button is always the hardest, after that they changes are easier. Our surgeon was happy to have us learn how to do the changes, and now we only have to see him as we need bigger sizes.

[Lindsay1234]

So can I ask what your feeding schedules are or any schedule advice? Sophia is 5 1/2 months now and shes on a schedule that hasnt been changed in 3 months. She has GERD and throws up frequently but I just upped her rate 10ml/hr today and shes doing fine with it.

Shes at:
8hrs continuous overnight 480ml at 65ml/hr

7am, 11am, 3pm, 7pm - 140ml at 65ml/hr

Basically she has 2hrs on and 2 hrs off the pump but she is getting hungry at 1.5 hrs so I feed her early.

Ok, so today I upped the rate (per the dietitian) to 75ml/hr during the day and she tolerated it fine! But maybe an hour or hour and a half after the feed, she was crying and hungry again! I know shes still young but I thought a bigger amount in her tummy would keep her fuller, longer so that she could be off the pump for longer amounts of time.

The dietitian doenst follow ANY kids that are tubefed with breastmilk so she doesnt really have any advise, its just trial and error for us.

Id like to up her rate more to make the feed go in over an hour or so and then Id like her to have a good stretch of time to play, sit up, tummy time, etc w/out throwing up. Right now, she has to be lying down to eat so she doesnt vomit. I was thinking too, that if I do smaller, frequent feeds, that would be fine, she is just SO full with 5 oz in her tummy, vomiting is inevitable!

[RoadWorkAhead]

We feed DD 60 mls as close to continuously as we can get, which is typically about 23 hours a day on a good day. Any more than that and she's sick. She refluxes at that, but its managable. When she was no food, DD could do bolus feeds, with an overnight feed, but she didn't gain weight on bolus feeds like she does on continuous.

[Momily]

Lindsay,

We never had a schedule when DS had his tube. He started out at 18 hours a day of continuous feeds, and the nutritionist and g-tube specialist was very clear that any 18 hours would do just fine.

Generally I hung a new bag full of 24 hours worth of formula. If he got a midnight chest PT session, I turned it off 1/2 an hour before, so he wouldn't reflux during the PT, and then turned it back on afterwards, otherwise I ran it straight through the night. Then in the morning we unplugged it while he was down and playing, and plugged him back in whenever he was doing something relatively still, like riding in the car or going for a walk in the stroller (long walks in the stroller were our godsend in those days), or sleeping. We also kept it unplugged for 1/2 an our before each nebtreatment/chest PT so we'd generally schedule playtime right before those (but those weren't really scheduled either, our pulmonologist just said to fit in 3 or 4 a day, no less than 4 hours apart, so we worked around the rest of the day. When the bag was empty we stopped until bedtime. Some days if he was traveling we'd end up with 6 straight hours of no feeds, and he was fine. More typical he'd have 10 or 15 minutes on, then 10 or 15 off, all day except for naps (e.g. on in the walk in the stroller on the way to the park, off as he ran around for 20 minutes, on for 10 minutes in the swing (I just jammed the backpack behind him in the baby swing), off for more play, on for the ride home etc . . .

I've never heard of another family without a schedule, but not having one made a huge difference to our quality of life, because we could grab every minute of potential playtime as it came up. He used his tube for continuous feeds during the day from 9 months to 2, and was a pretty active toddler, so this schedule let us spend the afternoon at the pool (feeds during adult swim!) or go to a birthday party regardless of the hour.

At first I was really worried about not having a schedule, but once he started really eating, around 2, and I could see how toddlers really eat (e.g. one day lots for breakfast, lots for dinner and nothing in between, the next day grazing all day long etc . . . ) I realized that what we were doing was pretty age appropriate.

I wouldn't go to a "schedule free" life without asking, but for us it made a huge difference.

[Lindsay1234]

Sophia has been grabbing her mic-key and pulling hard. She wont stop touching it, like shes just discovered it for the first time! LOL

Any tips on keeping it IN her body? I was thinking a tube gauze around her body like when she was younger. Maybe someone has made or bought some sort of a cumberbun-like contraption to make it harder for her to pull out?

Also, any input on why her gtube and accessories are covered by ins but her feeding therapy isnt? Wouldnt it be cheaper to get her off the tube?

[MotherWhimsey]

Put her in a onsie. Carters makes up to a 4T.

[Lindsay1234]

I am! LOL Shes grabbing through it! Pinching and pulling! These little babies have some grip! She pulled the extension tube out through her clothes about an hour ago, I only noticed because of the wet spot!

[MotherWhimsey]

oh, I thought you meant she was pulling her button out! You could pin a tape tab on the extension and pin it to her clothes, that way it won't spin to the unlocked position (if you have a mic-key). See what I'm saying? It's confusing to explain, so much easier to show someone.

[Lindsay1234]

No, I understand completely. Ill try that. I was looking at special gtube clothing with the thicker front panel, but they are EXPENSIVE!
I dont sew but I feel like I could sew a thick patch of soft cotton on the inside of her onesies so its harder for her fingers to grab a hold of it!

[MotherWhimsey]

This phase passes. So I wouldn't invest too much into it unless it becomes a bigger issue.

[anj_rn]

You can fairly cheaply by some white fabrics and stitch witchery and iron it into the clothes to prevent her from messing with it. The phase will pass eventually. We don't do g-tube clothes, but I have used the button hole part of my sewing machine to create a little access hole into many of DDs winter jammies. Otherwise, we just wear a lot of separates.

Also, you mentioned the vent so I assume your DD has a trach. Passy muir makes a valve that can work with the ventilator so you can hear your daughters voice (as long as she has an uncuffed tube). Speech therapy helped us get one. There is nothing better than being able to hear her voice, even if it is just fusses. We started a few minutes a day and are now up to 15 minutes 3 times a day (you can't wear it sleeping).