Friday G-tube Favorites: Supplies

If you asked a hundred g-tube users to name their favorite tube-related supplies, you’d get a hundred very different lists. Everything is so specific to the child's and family's needs. And that's just how it should be, isn't it?

Today I’d like to share our family's list. My hope here is that it might expose you to particular supplies that address a need you’ve had. I’m by no means a g-tube expert (oh my goodness, no!), just a mom with 12 years of trial and error under my belt. There may be better things out there but these work for us.

In as organized an order as I can think of (now there’s a pathetic cause for laughter!), here are my favorites related to g-tubes and why:

PEG (percutaneous endoscopic gastrostomy) placement procedure: We opted for this method for tube placement because it involved the least risk for our daughter. It took less than 15 minutes and required no stitches. She was left with a 12” tube that we had to be quite careful about for the next few months until it could be replaced with a low-profile button. We didn't want that puppy getting pulled out! But we felt that minimizing the risks to our child was more important than the inconvenience to us as caregivers.

AMT mini classic gastrostomy button:  We switch to this brand and style of balloon button after a year using another brand. She stopped producing granulation tissue after we switched, in part due to the design of the button to increase air flow under the device. The AMT mini classics last an average of 6-10 months for us before the valve or water balloon give out. They sit flat against my daughter’s stomach and don't show through her clothes. 

Another consideration for choosing a balloon device was that I could change it out at home. We've always lived an hour or more from our Children's Hospital. My daughter's g-tube site only gives us about 5 minutes to replace the button or it tries to close, so we don't have time to get her to the hospital. I need to be able to get a new one in myself--and quickly!

Thankfully, it's easy to replace. I think of it much like an earring, only instead of a separate backing to click in place, you simply fill the balloon with water.


We care for the button and site by washing it in the tub with soap and a good rinse of water. It's important to towel it dry afterward. That's all we do; we don't use gauze or pads except with ointments.

Right-angle continuous feed extensions: The right-angle tip on this AMT mini classic extension holds securely, so we have rarely had any accidents where the tubing has come disconnected. The right angle works well for us to prevent any lumps of unblended food from passing into the button. It’s much easier to flush a clog out of the extension! The right angle is also very discrete under clothing. The plastic tubing stays soft; this is not true of all brands from what other parents have said.


Sween CriticAid Skin Paste:  Granulation tissue is an overgrowth of skin when the body tries to heal itself. Almost everyone receiving a g-tube will experience this; it is so common that nurses often forget to mention it. Our daughter had a bit of a battle with granulation tissue and we tried a number of remedies. We had it burned off with silver nitrate sticks. We used prescription steroid cream. We tried various oils. But a wise GI nurse shared the benefits of Sween’s CriticAid. That took care of the granulation tissue within days and it’s never come back.

Calmoseptine Ointment: We don’t often see redness or irritation around the stoma (thanks to the design of the AMT mini classic), but when we do, a healthy glob of Calmoseptine spread around the area clears it up in a day or two. We do apply a split gauze 2x2 over the skin after we put Calmo on, to keep it from rubbing onto clothes.

Enteralite Infinity feeding pump (formerly owned by Zevex, now Moog):  We feed our daughter 3 meals a day as fast as the pump can run. This pump runs at 600cc/hour, making it perfect for a meal (and the competition at the time we got ours only ran at 400cc/hr, though that has changed). It can run upside down or on its side, making it wonderfully portable. It’s small and lightweight and—best of all for us—it handles liquefied food that’s been blended at home. Just this past month, we received a new style of bags that I haven’t play with much yet, so the jury’s out on the performance of the new bags. The old style could be a bit finicky, curling at the bottom to block the flow of food.

Vitamix:  I can’t say enough good things about the Vitamix! It pulverizes food into liquid using a 2-hp motor. I haven’t found any food yet that it can’t grind fine enough to go through the g-tube. If we ever had a house fire, I’d grab the Vitamix as I ran out the door. It’s that good.


Coorstek mortar and pestle: I think I’d have arthritis in my wrist by now after all these years of grinding heaps of medications and supplements into powder for the g-tube, were it not for our Coorstek mortar and pestle. I posted about this wonderful pair in a discussion about medications by g-tube here. 

North Face fanny pack.  Since our daughter sits while eating, the standard issue feeding pump backpack isn’t comfortable for her to use. Instead, her pump sits in a fanny pack strapped across the front of her belly. This doesn’t interfere with sitting and it gives us good access to the pump when we need it. We really liked the size and padding of the North Face fanny pack we found, although she’s used other makes and models over the years that we also liked. I sewed a fleece “pocket” for the pump to protect it even more against bumps; the fanny pack holds that, the Infinity pump, and a pint of blended food.

Venting set: One of the benefits of a g-tube that we didn’t learn about until after our daughter had hers placed was that it can be used to vent excess air from the stomach. What a godsend! Air swallowing is an issue facing many kids with Rett and other neurological issues. To be able to relieve that air before it has to travel south to exit is a major comfort. For venting air, we like the bolus extension tube and the cylinder of a catheter tip 60cc syringe pictured here (we don’t use the plunger).

I’m sure I’ve left some out some favorite of yours. Please tell us what that is in the comment box. Thanks!

The G-tube at School

I can’t predict whether your child’s g-tube feedings will be embraced at school or whether they will cause fear and trembling. Policies that govern school districts and even schools vary from one place to another. And the attitudes of individuals are, well, individual.

What can you do to tip the scale towards creating a relaxed, supportive feeding experience for your child and their school staff? Here are some ideas that have worked for us…

1) Plan to meet with the team to talk about tube feedings before your child ever arrives at school. This is your chance to model attitude and set the tone. If you view the feeding tube as “just another route to the stomach,” that will go far to ease tension. At the same time, you want to reinforce the importance of good hygiene, safe food handling, and sensitivity to your child’s digestive issues.

This meeting gives you a chance to reinforce your child's individual strengths and needs. Is she quite healthy, benefiting more from the social environment of the cafeteria than from a germ-controlled room (if such a thing existed)? Are positional or rate issues important for preventing vomiting? Are there steps in the routine he can carry out independently, along with plans for expanding those steps?

Repeat these trainings every year. There is a good chance your school team will have new members, and that these folks may have never been around g-tubes before. Even if they have, your child’s needs and your attitude may be different from their previous exposure. Or even from last year.

            --share your child’s story about tube feeding. Knowing history helps put today into perspective. Seeing the personal side of a “medical procedure” (oooh, that sends shivers up my spine) helps make it less daunting. It’s also a vivid reminder that your child is a person, first and foremost; the “medical” aspect of their care is simply how their care is delivered.

            --demonstrate with sample equipment and let EVERYONE touch it (including all the aides; maybe especially all the aides). I have a kit I bring with me to each year’s staff training meeting. We go over the contents together and I encourage everyone there to try out the equipment. This isn’t training on the specifics of using the equipment, but sharing general information to help folks become familiar and relaxed. This is just a teaching kit; it is NOT the same supply kit we send to school for back-up or button failure.

Here’s what’s in our kit; yours may look different.

A gastrostomy button. This is one we had left over when we switched brands
and has lasted through about ten trainings. I fill the balloon with air
to show how it anchors in the stomach. I feel it’s important for people
to see the whole device—the outer AND the inner parts—
so they can identify it quickly if it ever got pulled out.

A “sample stomach.” The small hole cut in the lid of the can represents the stoma.
Of course the depth is all off, but it helps the staff see how
the button and the body work together.

An extension tube. We have everyone practice the “three/quarter turn” to attach and detach.
In a true emergency where the trained staff are unavailable to feed my child,
someone else is more likely to step up the need if they have had a bit of hands-on practice.
I think it helps them relax to realize the syringe has a slip-tip rather than a needle.

Daily items that I bring along:

A feeding pump. I want people to hear the alarm so they can identify it.
I want them to hold it so they are less intimidated by "equipment."

A feeding bag. I point out the weak areas to help them troubleshoot alarms.
Of course, now that the manufacturer has adopted a new style,
I have new weaknesses to learn about!

           --encourage questions. Answer them honestly. Again, you are modeling attitude. You are also providing information that will help staff answer student questions.

[Warning:  soapbox preaching ahead]  This personal meeting is such a critical part of your child’s care. Interestingly enough, when I Googled “g-tube at school” the articles that came up stressed the medical precision of feedings. They emphasized the involvement of the child’s doctor and the school nurse and following written orders and sanitary conditions…and completely omitted the personal aspect of the child and family. Not one of the professional articles on Page One of the search results mentioned asking parents to participate in training the school team, unless they hid this suggestion in fine print in the appendix. Do you find that as curious as I do? Obviously, safety and medical protocol are important. But so is the personhood of the child. Feeding nourishes more than just the body…

2) Send a complete set of back-up supplies. Knowing there is a back-up plan—and adequate supplies to carry it out—helps people relax. If the nurse and teacher know they have spares in case of a clog or leak or earthquake, they (and you!) will be much less stressed over the “what ifs.” It also reduces the number of times you have to rush supplies to school. Be sure to send replacement extras for those that get used during the school year. We make sure there are plenty of spare extension tubes, bags, syringes, and frozen meals. We also have a Foley feeding tube for emergency replacement of the feeding button. The school staff can't insert it, but having it on hand saves precious minutes if I have to be called to replace the button.

3) Be available to walk the staff through problems, whether in person or over the phone. Just as you would never leave your child stranded, the staff should not be stranded either. It’s good to encourage them to solve problems on their own, because we all gain confidence when we come up with solutions. Just be sure to leave out criticism if their solutions are different from yours, so long as they are safe, workable ones.

4) Minimize steps for the school staff. They will appreciate you showing your support by doing what you can at home to keep feeding simple.  We send bags pre-filled, tubing pre-primed, pump pre-set. We make lunch the last meal of her bag's 24-hour lifespan, so there is no need to rinse it out to reuse later. I’d rather see the staff working on meaningful goals with my daughter than busying themselves preparing or cleaning up after her lunch. Your child’s feeding routine may require that his staff do more than ours, but whatever you can do to minimize their efforts with feeding will go far to demonstrate your support.

5) Check back periodically to make sure things are going well. You don’t have to be a pest. So long as things appear from your end to be going fairly well, you can just ask every few months whether there are any questions or concerns. A simple email or note at the bottom of your child’s daily communication sheet will do.

Obviously, if you notice any glaring problems, such as half of each day’s lunch coming back home with your child, then do address your concerns immediately. There are many issues that could be standing in the way, and some are fairly easily fixed. Others may take some sleuthing. But it’s a team thing, and you are the expert on your child’s team…

Do you have any other suggestions for helping g-tube feedings at school go smoothly?

Other g-tube posts that you might enjoy reading:

Feeding Tube Awareness Week
Adapting to the G-tube:  Our story

Favorite FREE book: PVC Assistive Technology Supports

PVC pipe is an amazing building material. It's fairly inexpensive, easy to find and simple to work with. You can use it to make all kinds of equipment to help your child. It can be used to create adaptive writing aids, eye gaze frames, sand tables, switch stands...and so much more. The Assistive Technology Educational Network in Florida has compiled a wonderful book that tells you how. Not only that, they have made it available for free download online! Many, many thanks to the great folks at ATEN for their generosity!

If you have never worked with PVC pipe before, this book will make you an expert in no time. It explains differences in types of PVC pipe and when each is appropriate to use. It teaches you how to cut, glue and paint the pipe. Then--this is the especially terrific part--the book offers designs for making a whole host of adaptive equipment! Each design includes a parts list (with pipe lengths listed, so you can pre-cut all your pieces or have them cut at the hardware store), a list of equipment and supplies, and assembly directions with schematic drawings. It has plans for 22 projects, including easels and sensory equipment and toy bowling ball launchers and headswitch mounts. There are even suggestions for how to modify these projects to work with your individual requirements. I'm waiting for a funding approval for a computerized voice output device for my daughter, at which point I can make a desk mount to fit. Please join me with a project or two of your own!

Happy creating and a great weekend,

Rose-Marie

Update (10/27/14): It appears the links in the original post moved. Thanks so much to a reader for calling this to my attention! I have updated the link to another host and now you should be able to access it without any sign-in. R-MG

Our favorite seat in the van!

We get stopped in the parking lot often with questions about our daughter’s van seat. It turns out many people have never seen a lift-up seat before. Come to think of it, I’m not sure how we even heard about them. But ours has been such a lifesaver as our daughter got too heavy to safely lift up and over the edge of her car seat, twisting our backs into contortions guaranteed to cause injury. She’s grown out of her car seat now, and the seat is perfect for her "young lady" size.



The five-point harness of the adaptive child seat helps maintain postion while the seatbelt rides across the lap and chest.



When it came time to replace our old mini-van, we chose a Toyota Sienna (2008) with a Bruno Lift-Up seat. We liked the fact that Bruno modified a genuine Toyota seat for the Sienna, so it matches the interior exactly. There are lifting and turning seats manufactured by other companies  (contact your local mobility center or Google "lifting auto seats"), but we like Toyotas and the fact this is the one that was made for a specific mini-van (we love mini-vans...they're the perfect vehicle for our family). Toyota and Bruno had such good success with their pairing that now Toyota offers this as a factory option on their 2011 Sienna…here’s a video link. It has some cool upgrades, such as a wireless control (which I'd love!), though I don’t know how the auto-recline feature would work with a car seat.

The lift-up seat has been a great solution for our needs. It allows us to get our daughter in and out of the van while still maintaining her standing and pivoting skills. It also gives her the crash protection of the factory installed seat belt. The van didn’t have to be altered in any way and it keeps all the seating and storage it would have had without the special seat. The seat itself takes barely any more space in the van than the original, although leg room for the passenger sitting on the bench behind the Lift-Up is cramped. Most of the time, we leave the rear bench stowed under the deck of the van, allowing us to keep our daughter’s stroller unfolded (which is easier for me to lift, for whatever odd reason). After she outgrew the car seat, we added a positioning harness merely to hold her trunk upright when she gets slumpy and then the van's retracting seat belt fits over her and the harness to hold her securely for crash protection. In the three years we've had the seat, we've only had one problem [hint: the seat continues to trickle battery power when it is deployed. Always return it to the inside of the van when you are finished. Always.]

The seat lowers to make an easy transfer into the stroller. Stand, step, pivot, sit. You have to love that!

For families needing assistance with transfers into a vehicle, I do recommend checking out lifting seats if you child has some weight-bearing and assists with transfers. Obviously, it’s not going to meet everyone’s needs, but if your child does not use a wheelchair full time and your goal is to maintain mobility, this is something to look into.