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**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**

Tuesday, May 1, 2012

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.

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