New Feeding Tube? What You'll Need for your G-Tube, GJ, or PEG!

Princess Allison and her Tubie at Disney World (and yes, that's a Snow White smooch on her forehead)

So you're new to feeding tubes - maybe you or your little on just had one placed, or you're researching before your surgery - and you need to know what you'll need once you transition home.  

Here's a list of things to get before you leave the hospital!  {Click HERE for a free printable!}

ORDERS:

1. Feed rates, HOW FAST to increase, HOW OFTEN to feed and GOALS.  Initial rates often come from the GI or Surgery Team.  The hospital nutritionist can help determine calorie/water goals.  Often times the GI Team takes over feeding orders once you leave the hospital.  TIP:  Gather your information and choose ONE person on your team to call the shots when it comes to feeding goals.  
2. Post Op Concerns:  
   1. When to resume "normal" activity including baths
   2. Dressing changes
   3. Stitch removal, etc.
3. Meds:  
   1. If you have added/changed meds you'll want written orders on how to administer them, including post-surgery pain medicines!  
   2. If continuing old meds after feeding tube placement now is a great time to ask if any adjustments for weight need to be made.
4. General Tube Care:  
   1. HOW to check the water in a balloon button and HOW OFTEN (usually weekly)
   2. What to do if the tube comes out (ask for a "red rubber" tube to keep the stoma open until you can get to the emergency room if they do not want you to put in a new tube yourself)

RXs:  A new feeding tube may be your introduction to working with a durable medical equipment (DME) company.  If your hospital system has their own company and you are in their service area it may be easiest for you to choose that company for your feeding tube equipment and nutrition as the hospital can coordinate your supplies for you.  Often times, they will be able to have your equipment in your hands before you leave the hospital.  If not, you may need to tell them which company you would like to work with.  In either case, make sure you get RX's for these items and have them on the way to your home BEFORE you get there!  

1. FOOD!  Make sure to get RXs for any formulas, pedialyte, etc. that you will be using!
2. Medications:  Refill any old medicines and get copies of any new RXs
3. Replacement G-Tube.  Most insurance providers allow for 1 new tube every 3 months.  Make sure you get one to keep at home!  
4. Extension tubing.  Many insurance providers allow for 1 new extension per week.  If you have an AMT GJ you will need extensions for both the "G" and "J" port as they are different!
5. Feeding Pump.  We love the Infinity because it is small, lightweight, does NOT require you to hang the food bag on a pole, and can handle blended diets.  Infinity Pumps and Joey Pumps should also come with a small backpack.  All pumps should come with chargers and IV pole clamps.
6. Feeding bags for your pump.  You should receive 1 bag per day.  Ask the hospital if they have an extra bag or two for you if you will be waiting for supplies!  See Also: Benefits of Using Coolers for G-Tube Feeds
7. Syringes:  We recommend rinsing and saving syringes used during your hospital stay to build up your stash at home!  Syringes are a huge part of Tubie Life!
   1. 60ml syringes for "bolus" feeds, venting, and pushing water
   2. Small oral syringes for medications (we liked 1ml, 5ml, and 10ml)
   3. The syringe needed to check water on your specific G-Tube:  the hospital may be able to send you home with a handful of them!
   4. "Christmas Tree" adapters.  You probably won't need these often, but they are nice to keep on hand!
8. IV Pole.  You'll want one of these for home, even if you don't use it for every feed.
9. Dressings, etc:  Get an RX and get these in your monthly DME shipments!
   1. 2x2 split gauze
   2. Tape, duoderm/tegaderm
   3. Barrier cream for tube site - we love calmoseptine!  ILEX is also a good choice, although it is really goopy!  
   4. Long swab applicators (q-tips).  The long handle is handy for cleaning tube sites.
   5. Surgilast Dressing is handy to support the weight of new tubes
   6. Surgilube packets for tube changes
   7. Adhesive remover
10. Farrell Bags, if using to vent during continuous feeds

FOLLOW UP APPOINTMENTS:

1. If at all possible, make follow-up appointments before you leave the hospital.  This includes your follow-up with the Surgery Team, your GI, Nutritionist, Primary Care Providers and/or Feeding Therapists.  It is easier to make these appointments before you are home trying to adjust to your new schedule!

{Click HERE for a free printable!}
Good luck on your journey!
Your Team Russcher Family


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