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!


Unknown said...

I'm 64 years old in December and I've had a g-tube for 11 years. Everything I eat goes through the tube. My regular food is Ensure+ and ISOSource 4 time a day. Sometimes, depending on the supplier I'll get Boost and Jevity 1.5.
For many years I used the gravity feed method. My food is thick so it time for it to work it's way down the tube. I have a supply of 70cc irrigation syringes. I like this type because it has a thumb ring For me, this method is the fastest and easiest to use. I use a 16oz Ziploc medium round container to mix two cans of my food and water. I also have an 8oz Ziploc round container for flush water. The only time I use gravity feed method is when I put my medicine through the tube. I flush it once at the beginning, put 1 liter of food and water through the tube and then flush it twice to make sure the water in the visible part of the tube is clear.
When I get the urge, I'll cut up some fruit grind it up in my Magic Bullit and make about 1 liter each time. Each meal I will have 70cc to 140cc of fruit. I also mix leftovers, however, steak, turkey and chicken doesn't mix very well in the Bullit so I use my bigger blender. That's part of my story.

Unknown said...

Hi there! That sween citric acid paste- is that the only place you can get it? I think you are in NZ- I am too so id love to know where you get it. Thankyou!

Anonymous said...

What North Face model fanny pack is that? I usually sit and feeding tube back packs are a pain on my back.