Car seats and feeding tubes

When DD gets her G tube soon I'm wondering how it works with seats. She switches between RFing and FFing depending on her mood and our moods. She will be hooked up to feedings (via a pump) all the time at first, and then only at night after a few weeks.

My questions for those who deal with this:

1. Is the G tube going to interfere with the straps? Will the straps rub on it and annoy it??

2. How do I keep anything from touching it right after surgery while it's still painful?

3. How do I keep her hooked up for feedings and where does the pump go?

4. Do you find forward facing or rear facing is easier with a tube? Or does it not matter?

I won't be able to use her Start for a long time (with the shield) cause it presses so hard on her belly so she'll have to go in a harnessed seat and I don't know which seat/direction is best.

Thanks for any help!

No experience with this - just a warning. But I would think rfng would be a little bit easier as she's reclined a bit more. A friend at church has a 8 year old with a feeding tube. It connects to a little blue backpack. Not sure what your's might look like, but you might be able to hang the backpack on a headrest so that the tubes don't get tangled.

Good luck! Hope your DD is doing better!!!

Whether or not the straps rub on the sore areas depends on the placement of the G-tube. Dead center or way to the side tends to work better than slightly to the side. If you can take a picture of her in her seat without her shirt on, maybe even use a marker to trace out the placement of her harness with a marker, to show her doctor where her straps hit, the dr may be able to choose a good spot based on that.

If the tube is midline, so that it ends up between the harness straps, I would recommend making the parental choice to remove the chest clip, as the chest clip sliding down over the button can cause damage. This is more of a concern when ffing than rfing, and more of a concern when attached to her pump than just the button. You may need to pad the surgical site until it has healed. Choose something that interferes with harness tightness as little as possible. A gauze "donut" can work well. I have also had pretty good success using the harness comfort pads if they come with the seat. I feel good about the comfort pads because I at least know they have been tested and found not to be too thick.

When she is attached to the pump, it is very very important to make sure that the pump itself is well secured. You do not want it going flying.

HTH

No idea, but nice to see you back.

Here's how we do it. I can take pictures tomorrow if it'd help.

Sydney's currently rear facing in a Marathon/Decathlon. We have never had an issue with the straps interfering with the g-tube. I was all prepared to tuck some soft cushioning around the area when she first got it, but honestly - she was discharged about 24 hours after getting her tube placed and it didn't bother her at all to have us tighten the straps.

What kind of pump are you getting? I HIGHLY recommend the Zevex Infinity pump, it is very light and IME so much easier for them to carry around than even the Kangaroo. We have an Infinity and we just buckle her in like normal with her extension hooked up (you'll use extensions no matter what kind of pump you have if you have a button, these are the 12-24" pieces that go from the button to the actual pump bag) and we run the extension down the side of the car seat. We then hook her pump backpack using a carabiner to the headrest of the seat in front of her (since she's rear facing) and the extension connects to the bag with the formula that is coming out of her pump.

When she's forward facing (which she is, very occasionally) - in DH's sedan we buckle her pump backpack into the seat next to her. In my minivan we attach the pump backpack to the headrest of the seat her car seat is in, so that it is completely behind the headrest. If you were really paranoid you could buckle the pump backpack into the very back seat.

I honestly find FFing MUCH easier in DH's car and RFing easier in my car for tube feeding, but neither are so much easier or harder that it makes me go, "oh, we HAVE to install her car seat that way" if that makes any sense. I'm not dreading turning her FFing by any means in my car.

OK, pictures of some of what I'm talking about LMK if you want pictures of Sydney strapped in with her tube attached. It might help you picture more what I'm saying.


there's a button - that one shown is a Mickey button. They are probably the most common. We personally use an AMT Mini One button, which is a different brand/company. We like AMT better because they are lower profile and they seem to last longer. The Mini Ones take the same extensions as the Mickey buttons.


Those are the extensions I'm talking about - those happen to be AMT ones, but Mickey ones look about the same. You will want the right angle extensions like the one on the right.

Then - see that red port at the end? Those will then plug into the top of the extensions. The blue part loops into the pump, which if you are using those Zevex bags would be the Zevex pump, which looks like the pump on this page (sorry, I couldn't find a picture)
and then fits into a backpack like this:

The other pump that is very popular is the Kangaroo Joey. Most people I've met who have tried both hands down LOVE the Infinity over the Joey, especially with smaller kids, as the Joey is twice the size of the Infinity.

Also, another thing to remember is that in an accident, your biggest worry is the pump being a projectile which is why you want to at minimum carabine it and possibly buckle it. I honestly can't think of a way, if you have the pump fastened down, that it could move enough to pull her button out of her stomach. And if it somehow did, the button will just come out, it's not hugely traumatic. I have only pulled Sydney's button out once accidentally...by stepping on her extension and then trying to pick her up She was totally fine (once she got over the initial shock of me pulling out her button, lol) and that was WAY more force than an accident would have, if that makes sense? Since her backpack cannot fly very far in an accident if fastened to the headrest or at all if buckled in.

safeinthecar said:

If the tube is midline, so that it ends up between the harness straps, I would recommend making the parental choice to remove the chest clip, as the chest clip sliding down over the button can cause damage. This is more of a concern when ffing than rfing, and more of a concern when attached to her pump than just the button. You may need to pad the surgical site until it has healed. Choose something that interferes with harness tightness as little as possible. A gauze "donut" can work well. I have also had pretty good success using the harness comfort pads if they come with the seat. I feel good about the comfort pads because I at least know they have been tested and found not to be too thick.

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Hmm. I honestly don't know if I'd worry that much. Maybe while it is first healing, since you are trying to form a stoma then, but once it is healed, the worst thing I could see happening would be the button getting pulled out in an accident. I know some kids who pull their buttons out once a week and don't have any damage to their stomas so I don't think the damage risk is honestly that high.

I mean, I am totally not against removing the chest clip if you're super paranoid about it, but the statistical chance of something truly damaging the stoma during an accident because of the chest clip is really, really remote IMO...

serabi said:

I honestly can't think of a way, if you have the pump fastened down, that it could move enough to pull her button out of her stomach. And if it somehow did, the button will just come out, it's not hugely traumatic. I have only pulled Sydney's button out once accidentally...by stepping on her extension and then trying to pick her up She was totally fine (once she got over the initial shock of me pulling out her button, lol) and that was WAY more force than an accident would have, if that makes sense? Since her backpack cannot fly very far in an accident if fastened to the headrest or at all if buckled in.

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You might want to think about using a seat with a washable cover and having a spare. In my experience, I've had more trouble with the tubes from the bag coming out of the extension and "feeding" my car instead of the child it was supposed to be feeding. (And with a pump, you're going to feed the seat much less than if just doing a bolus/gravity feeding!) Ensure in your vehicle seat in 90 degree heat does NOT smell pleasant.

I just looked at the links for the pumps -- boy, have they gotten smaller and lighter in the last 20 years!

Tina

momtoirs said:

You might want to think about using a seat with a washable cover and having a spare. In my experience, I've had more trouble with the tubes from the bag coming out of the extension and "feeding" my car instead of the child it was supposed to be feeding. (And with a pump, you're going to feed the seat much less than if just doing a bolus/gravity feeding!) Ensure in your vehicle seat in 90 degree heat does NOT smell pleasant.

I just looked at the links for the pumps -- boy, have they gotten smaller and lighter in the last 20 years!

Tina

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There was one time I fed our Decathlon 8oz of Splash formula in 80 degree heat. That was foul enough. I can't even imagine Ensure so yeah, definitely have spare covers or a spare seat.

Tina, I bet the Kangaroo looks positively tiny to you, nevermind the Zevex! :ROTFLMAO:

This thread might be useful for you to read.

OK, rereading that thread, you posted in it, so you probably already read it. Oh well, I tried.

In out special needs class, they brought up the need for another cover, and making sure the the pump is seat belted in, or on the floor, tied down. Also, I agree with Kimberly, on the chest clip, etc.

Wow! Thanks for all the advice! I'm amazed so many people are so knowledgeable about this stuff cause I have no clue!

The whole no chest clip thing scares me. I understand what it does and why and that it's not necessary for a properly tightened harness but I just have this vision of my child flying straight out the middle of the straps! Tell me I'm paranoid please!

Thank you for the links and pics too. I really hope I can get the Infinity pump. We go Monday for our little feeding tube "class" and I can ask then.

I just hope she's not in too much pain. Maybe I'll put her rear facing at first while she's healing so if we do get in an accident her abdomen isn't flying into a harness. Atleast if she's RFing, even during breaking she won't have that pressure there.

serabi said:

There was one time I fed our Decathlon 8oz of Splash formula in 80 degree heat. That was foul enough. I can't even imagine Ensure so yeah, definitely have spare covers or a spare seat.

Tina, I bet the Kangaroo looks positively tiny to you, nevermind the Zevex! :ROTFLMAO:

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Ewwwww. Thanks for the tip! LOL. Do they sell young sport spare covers?

JerseyGirl'sMama said:

No idea, but nice to see you back.

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Thanks

OK total honest question (sorry for hijacking your thread Joanne!) - I did a search for feeding tubes/pumps on this board back when Sydney got hers and I've never seen taking the chest clip off being recommended before - is this a new SN class recommendation? Because I think I've read every single thread on tubes on this board and this is the first I've heard of it.

This thread is the one I learned the most from - has something changed since 2007? If so, why has it changed, since a tube coming out accidentally won't damage the stoma? Because if this is the new recommendation, I'm going to need a REALLY good argument to convince my DH

again, sorry for hijacking

Oh, and congrats on your new siggy.

In my SN class the teacher mentioned using a heavy-duty strap, around the front seat directly behind the RF"ing car seat, and securing the backpack with a load-bearing caribiner. At 25 pounds, I'd keep her RF'ing.

serabi said:

OK total honest question (sorry for hijacking your thread Joanne!) - I did a search for feeding tubes/pumps on this board back when Sydney got hers and I've never seen taking the chest clip off being recommended before - is this a new SN class recommendation? Because I think I've read every single thread on tubes on this board and this is the first I've heard of it.

This thread is the one I learned the most from - has something changed since 2007? If so, why has it changed, since a tube coming out accidentally won't damage the stoma? Because if this is the new recommendation, I'm going to need a REALLY good argument to convince my DH

again, sorry for hijacking

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I personally don't see a reason to take it off. *Maybe* while it's still healing if you are very concerned it will get pulled out. But DD's tube has come out probably 15 times and her stoma is perfect. It had 2 months to heal before it came out the first time though. Not sure about what's actually recommended...

Shaunam said:

I personally don't see a reason to take it off. *Maybe* while it's still healing if you are very concerned it will get pulled out. But DD's tube has come out probably 15 times and her stoma is perfect. It had 2 months to heal before it came out the first time though. Not sure about what's actually recommended...

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The way I understand it is the chest clip sliding down the harness is not so much a hazard because it may pull it out, but because it may put enough pressure on it to cause internal damage.

safeinthecar said:

The way I understand it is the chest clip sliding down the harness is not so much a hazard because it may pull it out, but because it may put enough pressure on it to cause internal damage.

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Maybe they were thinking about BARD buttons? They don't have balloons so they require a lot more force to come out. The kind of buttons our kids have, have balloons - I don't think there's any way you could exert enough force to cause internal damage before the balloon would just burst.

My dd had a feeding tube for 5 years. It never occurred to me to worry about the chest clip. She herself would put a lot of pressure on the button, and it never seemed to bother her. She was in a Graco Cargo for most of the time with her tube, and the straps were somewhat close to the tube, but not pressing directly on it IIRC.

When she got the tube she was RF in an infant seat, then an Evenflo convertible and those were fine too. Her pain was very minimal. She was in the hospital overnight, went home in the morning. She took Tylenol w/Codeine for about 1 day and that was it.

We tried to avoid feeding in the car as much as possible. The only time we really had to was when she was on J feeds because they take so much longer, or on long trips. We had a few times of "feeding the car" multiple ounces of Nutramigen--so gross.

When she did feed in the car, we put everything in the backpack (we had one of those small Zevex types serabi posted). We had a clip thing and we would hook the backpack to whatever we could (headrest, etc). Definitely get a pump like the Zevex or Kangaroo Joey that does not have a drip chamber. We initially had a Kangaroo Pet, and it had to be upright the whole time which is a major pain.

As an aside, I also recommend not putting gauze, etc around the tube. We had much better luck with just leaving nothing on it. In the beginning, she stained a few clothes, but after a while it was totally fine, and I think it reduced the granulation tissue and general yuckiness of the area. If it seems unstable in the beginning it might be good, but once it's healed, we found that leaving it alone and just washing it in the tube when she had a bath was the best.