Understanding Life with a Feeding Tube
Explaining a day in the life/daily routine of tube feeding and all it requires
Owen's daily routine is a little different from others with a feeding tube because he does not bolus feed at all.
Each night, after Owen goes to sleep, I make a full days worth of neocate formula for the next day.
Above is a picture of the jug I use to mix it. I use this jug because neocate is very difficult to mix. This jug enables me to shake well and does not leak! We bought a few jugs that would hold the amount we would need for a full day of formula but this one was one that didn't leak when we held it upside down!
Mixing a full days worth of formula the night before makes the day run smoother :)
In the morning, after getting Owen cleaned up and out of bed (there is usually a big mess of poop/pee due to all the fluids he gets overnight with his g-tube feeds and his tpn), we first grab a new formula bag and unhook Owen from his tubing.
The above picture is a picture of Owen's feeding pump and the formula bag that goes with that pump. We first fill the bag with 250mls of formula (about 4hours of feeding), take all the air out of the bag by turning the bag upside down and priming the air out of the bag. Then we prime the tubing. Priming the tubing is important because you do not want too much air to go into the stomach. For Owen, too much air can cause major problems with gut motility.
After filling and priming the bag, its time to put it into his backpack! Here is a video :)
After loading the backpack we need to connect the extension tubing to Owen and put his backpack on!
Throughout the day we have to fill the bag. I fill the bag every 3 hours or so to make sure he doesn't run out. I can usually refill the bag while the backpack is still on Owen - he just sits there and lets me do it :)
Here is a video on how to refill the bag!
Owen also takes medications throughout the day. Depending on the day of the month, Owen could have medications every 6 hours, every 4 hours, or just once a day. When it comes time for a medication, we simply pause the feeding, draw up the med using a syringe, push the med through the med port on the g-tube extension set (the closed port in the picture shown below), close the med port, restart the pump, and send Owen on his way :)
We change the mic-key extension set once a week and flush it with warm water daily to keep it from getting clogged with a med or formula (extension set shown below)
On top of Owen's g-tube feeds, Owen also eats by mouth during each meal time (just picks at what he wants) and he gets TPN through his broviac 12hours during the night. The TPN takes up more of the day than the continuous g-tube feeds. Owen's backpack for his g-tube feeds has saved our lives! We have a mobile tubie!