As we ventured into the feeding tube outside of the hospital world, I realized that the medical establishment is seriously lacking in support for families like ours! I had to figure out most everything on my own (I’m so thankful for online forums and the other experienced parents out there!). Here’s a hopefully helpful start up list for you:
Get connected with your DME or Home Health agency (ours is a HH/home infusion side).
Ask questions. What supplies will my insurance cover? What are the monthly limits? What should I expect as our co-pay. What tapes (and other supplies with variety) do you have avaliable (ask for this list in writing so you can reference later). How do I get supplies? What happens when a holiday falls at the very end or beginning of a month? Who do I call for help? What if I run out of supplies before the end of the month?
Now make a list of supplies you’ll need- if you have an awesome DME, they can help you figure this out. What I’m learning is that many DMEs are pretty stingy with supplies so I wouldn’t rely fully on them and be sure to question anything that sounds iffy to you. Feeding bags should only be used 24 hours, syringes state one time use (though we often use them for a day), etc… make sure you understand and are comfortable with what they are telling you. Knowing what your insurance will cover is a big help here!
- Feeding pump with power cord (for breastmilk we used Infinity Orange, once starting real food mixed in we switched to Infinity Teal)
- IV pole & clamp (I had to request this after being home a week and realizing we needed it)
- Feeding backpack (personally I don’t like the supplied one so I ordered our own)
- Feeding bags for your pump- request extra- each is good for 24 hours. I recommend 35-40 each month. This covers replacement/breakage and a little back stock in case of late shipments or other delays.
- Feeding extensions- I like two per week (8 per month) plus a couple bolus extensions (no med port- straight instead of right angle) just in case. I request a total of 10 each month (8 right angle + 2 bolus).
- Syringes- small to large- cath tip & slip tip
- Split gauze- minimum two per day, we get 60 packs of 2 each month currently.
- Tape- request a variety until you know what works!
- Tegaderm and securement devices- depending on tube type and skin sensitivity.
- Cotton tip applicators
- Spare button- this is a biggie! Always, always, always have a spare button kit on hand.
Additional info- ask your DME if you will be receiving the EnFit connections- if so, make sure you are clear on how to use them and if you need locking syringes for that connection. I have not used EnFit (yet anyway…) but my understanding is that system will be rolling out to replace all of the existing connections. Here is a link to the Feeding Tube Awareness sites explanation of the EnFit system. They also have a list of products that are specific to EnFit. You’ll still want slip tip syringes for direct to the button use.