We’re minimalists and zero-wasters at heart, but when you have a kiddo with a feeding tube you end up relaxing a bit in both of these areas due to the overwhelming amount of supplies that you get on a regular basis and accumulate over time. As time has gone on and Sumner has not needed his feeding tube as much, our storage of his items has changed.
Before I go too far, I want to acknowledge that we’re blessed to have wonderful insurance coverage and we have a home with lots of available storage space. When Sumner was placed with us, he was covered by our primary insurance and medicaid. Once the adoption was finalized, the medicaid went away. Because of these coverages, we haven’t had to worry about whether we would have the things we needed for his care. Also, not having to pay for formula has been an immense help as we’ve had lots of other unexpected things to handle with his medical needs.
Every month our durable medical equipment (DME) provider sends us the feeding supplies that we need. These supplies include:
- feeding pump bags,
- extensions (to access his g-tube),
- thickener for liquids, and
It usually comes in three big boxes. Some months we end up with leftovers, usually this is related to how well Sumner is doing with his oral intake. Also, we try to extend the life of everything that we get. One of the common issues that I see in the feeding tube groups I’m in is supply issues. Either the DME makes a mistake and doesn’t send enough of what people need, insurance doesn’t cover everything (seems to be most common with formula), or necessary items like feeding pump bags (for a different pump than we one we have) are experiencing a national shortage and the DME isn’t able to send enough.
Our general approach to storage is two-fold. We like to keep things where we use them and then have overflow storage.
The bulk of Sumner’s supplies are stored in the kitchen as that is where eating happens. He has a dedicated shelf in the pantry for his formula, thickener, and shelf-stable food. He has an entire cabinet for his bottles and assorted cups. I feel like we own and have tried every cup known at this point in our search to transition him off bottles. (More to come on that journey another time.) He has two drawers for his other eating supplies like spoons, straws, etc and for his burp cloths, excess syringes, and bibs. At this point, with the exception of the syringes, most of what he has in the kitchen is typical baby stuff.
The rest of his feeding tube supplies are stored upstairs in his bathroom. Under the bathroom sink, I have three organizers. The two drawer organizers hold his extra 60 mL syringes and extensions. The three-drawer organizer has his extra lotions and potions for controlling his eczema, tendergrips and skin prep for securing his nasal cannula to his face, and sanitizer. I also keep his back-up buttons there.
The linen closet has his extra nasal cannulas. When I reorganized his bathroom, I was able to get the most of his supplies in there. It’s a work in progress. The linen closet used to have his feeding bags as well, but since we had transitioned to gravity feeding (pictured below), I moved his extra bags and feeding pump to my office closet.
I’m looking forward to the day when Sumner is completely tube free and we can reclaim all of these storage spaces from his medical gear.