Skip to main content

How we store our feeding tube supplies

I was going to title this post "Where to put all that medical crap" but decided not to. :)

Back when Raya first got discharged from the hospital at 2 months old with an NG tube, I looked at the pile (wagon load) of supplies we brought home with us and thought to myself, "Gosh, I don't know where we're going to put all of this stuff!" Now I laugh at the thought that back then, I really felt like we had a whole bunch of stuff to store. :) We had a Kangaroo Joey pump & backpack, a week's worth of pump bags, IV pole, charger, a few diapers, half a bottle of sterile water, 1 roll of durapore tape, 3 cans of formula, and 36 2 oz bottles of ready-to-feed formula. Now 2 years and 3 months later, we've accumulated a LOT more and all we have is a feeding tube to manage. We don't have any other devices to manage (i.e. trach, port, PICC, Broviac, Hickman, ventilator, ostomy, oxygen, mobility aids, suction machine, catheter, etc.) so we definitely have a lot less medical supplies around than other families. What we do have still takes up a lot of space though, so I thought I'd share how we keep everything organized.

The first stop on our little tour is the "black shelf thing". Aren't my kids cute? :)
I got the shelf unit, the baskets, and the shoebox-size boxes from Ikea, by the way. If you look closely, you can see that there are cases of Peptamen Jr underneath and cases of Pedialyte in the space between the shelf & the wall. Unfortunately that's the best place I've come up with to put those boxes (can't put perishables in the garage due to the hellish summer that is fast approaching) and now that Nestle has changed the packaging, the new cases won't fit under there. Thanks a lot, Nestle...

The first basket has miscellaneous junk in it. Every house needs at least one miscellaneous junk basket, right? :) The second basket has several different types of extension tubes and gauze:

Basket #3 has 4 foot tubing extensions and 60ml cath tip syringes in it:

And the 4th basket has the lovely Zevex Enteralite Infinity pump bags in it, or as Raya calls them, "bads" for her "beep beep"

The black boxes above the big baskets have medical tape in them. All 4 boxes. Lots of tape.
(this is about the point in the tour where I start realizing that I've become a hoarder of medical supplies...)

The next stop on the tour is the medical supply bench. I got it for Christmas when Raya was a month old for storing photography props.

Then 3 weeks later she got her NG tube and it became a medical supply bench. :) Now it has a lot of miscellaneous supplies in it that we don't use very often or are extras of things that don't need to be replaced very often:
(again, feeling like a hoarder of medical supplies and actually a little embarrassed about how much we have. we're very lucky and I've also done a lot of fighting with insurance & home health in the past 2 years & 3 months in order to get a lot of what we have around here.)

And finally, the formula cabinet:
It doesn't look as cool anymore with the new carton-type packaging instead of the cans. The extra cases won't fit in the cupboard or under the black shelf thing anymore either and the kids are going to be bummed when they no longer supply the Ronald McDonald House pop tab collection box at school with an embarrassing number of pop tabs. I stopped stacking the cans 3 high all the way across the whole shelf because it was bowing in the middle and I didn't want the whole thing to come crashing down, especially since this is the home of the microwave too. In the drawer above the shelves are all of Raya's feeding therapy tools (chewy tubes, assorted toothbrushes, whistles, etc) along with a lot of other miscellaneous junk.

There is also a small basket next to Raya's dresser with gauze, paper tape, and a few syringes. Next to that are the diapers & wipes. The top drawer in my nightstand has more gauze, more paper tape, 2 different thermometers, Hypafix tape & scissors to cut it with, a couple of extension tubes, an emergency G tube & the syringe that goes with it, a bunch of Stat-Lock supplies that we tried out when she had a GJ tube, and some baby washcloths. The next drawer down has piles and piles of cloth diapers that we used to use as puke rags. Most of them have been sitting in the drawer for about a year now and that makes me very happy. :)

That pretty much concludes the medical supply storage tour. Lest anyone should think that I'm really THAT organized, I should mention that there are random medical supplies strewn all around the house. I have boxes of formula, Pedialyte, and feeding pump bags that I don't have places for. Sometimes I think the extension tubes have crawled off in some corner and started reproducing because just when I think I've collected & thrown away all the used ones, I walk into a room and step on one. Those suckers hurt! At this moment, there are 3 different rolls of medical tape on my computer desk in my office, which Raya never even goes in. There is also medical tape in my purse, diaper bag, car, on the kitchen counters, in bathroom cupboards, and under the couch. I think I could do a whole post about the alternate uses the kids have found for medical tape too. (like fixing a broken flip flop when we were out of the house once) There are syringes and parts of syringes EVERYWHERE, and don't even get me started on the packaging from the gauze and the paper strips off the back of the Hypafix tape. Oh, and it never fails that in every single load of laundry, there will be at least ONE item that comes out of the dryer with medical tape stuck to it. And you know what? Someday all of this will be gone and although we'll be excited, a part of me will be sad to see it all go too and it will be strange to be without it. Is that weird?

*Note: If you are struggling to get supplies and formula covered or are short on something that you really need, there are several supply and formula exchanges that allow you to get things for very low costs. A lot of people end up having extras of things that insurance has paid for and they can't sell them so they're willing to donate them for the cost of shipping. If you have things that you can no longer use, PLEASE consider donating instead of throwing them away! Here's a list of several of the supply exchanges, courtesy of Feeding Tube Awareness.


Popular Posts

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …