When we first got a g-tube, I scoured the internet for tube feeding resources. After 1.5 years of tube feeding and surviving granulation tissue, infections, feeding the bed, making countless bags of formula, and other tube-feeding mishaps, I feel like something of an expert in this field (except blenderized diets--this is a tube feeding area I know next to nothing about). I thought, for the benefit of other Googlers out there, I would publish some of the things we have found to work.
Caveat: every tube feeding family does it a little different and has different circumstances. My son is on continuous feeds, which is more the exception than the norm. So, some of these things won't make sense for bolus feeding.
**Calmoseptine Ointment: available over the counter in pharmacies (but usually kept behind the counter), Calmoseptine has been the most effective preventive solution to granulation tissue. We put a thick layer on the stoma and then cover it with gauze or button buddies (see below).
**Dressings: Some people don't use dressing for their stomas. Our boys have too much discharge and we find they stay healthier when we keep them covered. We use a combination of split gauze (aka IV sponges) and Button Buddies or a derivative thereof. There are lots of tube feeding mamas who make little g-tube pads to be used in place of gauze. They can be washed and re-used and are often made in cute patterns. Search Etsy as there are many different options.
**Extension Tubing: This is the tubing that attaches to the button (g-tube) and then is further attached to the feeding bag. What kind you can use depends in part on what kind of g-tube you have. We have always had MIC-Key or MIC-Key equivalent g-tube buttons (AMT Mini One). I prefer the AMT Mini-One MIC-Key Compatible extension tubing versus the actual MIC-Key brand tubing. It has a wider diameter, is more flexible and holds the "christmas tree" tip of the feeding bag in place more securely. We use two kinds: the right-angle single port (purple tip) tubes and the y-port (it has a med port for administering meds) right-angle (clear tips) tubes. In all, I prefer using the single port because my son had a habit of opening the med port on the y-port tubes and then getting yucky formula on everything. However, the single port was a challenge to administer medications through. We recently found that using Luer-Lok syringes makes it easy to administer meds through the single port. The Luer-Lok syringe tip fits perfectly and securely into the extension tubing.
**Syringes: see my discussion of Luer-Lok syringes above. We generally order 10 ml syringes but you can get any size as long as they are Luer-Lok. Additionally, we always have 60 ml bolus syringes we use for venting (only necessary if your child has a Nissen Fundoplication) and water flushes.
**G-Tubes: As I mentioned, we use MIC-Key or MIC-Key equivalent g-tubes. I actually prefer AMT Mini-One g-tubes.
**Pumps: We have only ever used the Zevex Enteralite Infinity Pump. I love this pump. We have used the Kangaroo pump in the hospital and it is much heavier and bulkier. I had a small child who started using the pump at 7 mos old. He learned to sit up, crawl and walk wearing his pump. Because it hasn't impacted his mobility, I am a big fan of the Zevex. We would not have had such success with his mobility if he had used the Kangaroo.
**Backpacks: until recently, we used the Zevex Super Mini backpack for our son to carry his pump in. It is very small and makes it easy to carry, even as a baby, but it does have a bit of a tendency to "turtle" him, which can make him less stable when walking. We recently started using backpacks from Feeding Essentials, which we really like. The Feeding Essentials backpack is slimmer (slightly longer) and much lower profile. It also has a better front strap that we have determined reduces chafing on his neck from the straps. Loading the Feeding Essentials is a bit of a pain but way easier on him to carry.
**Formula Pitcher: I am all about efficiency. For this reason, I make my bags once a day and mix all of the day's formula at once. I use the Dr. Brown's formula pitcher. This is a great pitcher as it has an emulsifying mixer attachment for thoroughly combining formula and has exact measurements on the pitcher in both mls and ounces. This is critical when you have a child who is on a very controlled diet and you are counting every ounce they get. I make my bags in the evening. I take what is left of the bag he was feeding from throughout the day (kept cool with freezer packs in the backpack) and add the amount of formula I need for his overnight feed. I then take the remaining formula I have mixed and make a bag for the next day. I refrigerate that bag and then, in the morning, I just load his backpack up. It saves a lot of time.
**Bella Bands: My son goes to preschool/daycare. They were slightly concerned about other kids pulling on any excess tubing that may be visible between his clothes and the backpack. We solved this problem by buying a Bella Band (available at Target and online--it is a pregnancy band) in size XS. We then just put the Band completely over his clothes and backpack. This hides and makes any tubing completely inaccessible and has the added benefit of stabilizing him a little so that the backpack load isn't quite as back-heavy. It works great. By the way, we've never actually found an issue with kids pulling on his tubes even when they are exposed but this gives a method for peace of mind.
**Tape: We use a couple kinds of tape. We use cloth tape and satin tape (both medical tapes). The cloth tape we use to create a little tag about midway down his extension tubing. We then use the tag to diaper-pin the extension tubing to his clothes. This makes it so that if the tubing gets pulled, it will pull on his clothes and not on his actual g-tube, reducing the risk of the g-tube getting pulled out accidentally and discomfort to him. We use the satin tape to affix gauze over the stoma. We don't tape directly to the skin, we just use a little to secure the open ends of the gauze together. I don't like the irritation that taping to the skin causes.
**Nighttime feeds: Many tube families will find themselves having to do overnight feeds at one time or another. When we first got our tube, we were never given an IV pole, so we didn't even know that was an option for hanging the bag at night. However, our son doesn't frequently stay the entire night in his bed anyway (sigh) and so we found that just extending the tubing and putting the backpack in a corner of his crib worked just fine and was way more portable than the IV pole.
Hope someone comes across this and finds it helpful! These are little things that have made our days run much smoother.
