Daily Life with a Feeding Tube

Tuesday, February 7^th

Topic: Understanding life with a feeding tube, explain a day in the life and daily routines of tube feeding and all that is required.

What is a day like for our family? Back 4 years ago we had two children on feeding pumps and special formula. I would end the day mixing the formula for the next day needed for both children and place it in the refrigerator. The formula would be mixed the night before because it had to be mixed in hot water to have the formula dissolved enough to not plug the feeding pump bags or the extensions. Mixing the concentrated Neocate in hot water then leaving in the refrigerator overnight would prevent clumps in the formula. With two children on the same formula and same concentration was nice because I was able to mix what was needed for both children. 

Using a plunger pitcher I could easily remix the formula before dumping into the feeding pump bags, prime for each feeding, load either IV pole set up or the backpack and hook the child up for the feeding.

Both children would get hooked up to their extensions typically at that point using latex free band aids as this would allow for the extension to be woven through easily and removed as needed. Later we were given a prescription for duoderm and tagaderm allowing for the extensions to be taped to the skin without tearing their skin apart.

Both children also had meds that had to be crushed. I would crush Zach’s meds, mix with half water half applesauce then give his meds, then repeat the process with Ellie. Zach only had a few meds and took his meds a couple times a day. Ellie on the other hand at one point was taking meds either crushed pills or liquid every few hours. She had many meds so using a chart, and the calendar function in my cell phone in the medicine cabinet we were able to keep track of the meds and doses.

Now with only Ellie having a feeding tube her typical day starts with her hopping in the shower, then she gets a sinus rinse, her nebulizer breathing treatment (during her nebulizer treatment her hair is done for school), followed by her acapella vibrating treatment. Once this is finished she get her Flovent via her spacer then her nasal sprays. The next step is to either check her feeding tube extension and tagaderm or replace the extension and tagaderm if needed.

Next we do her morning meds. If she is in the mood for oral meds we take then via her nectar thick liquids otherwise we crush the meds and push them through her feeding tube. Finally, she is able to eat breakfast, then brush her teeth, while her lunch for school is made, and her feeding pump is prepped and primed for school. With this finished up she gets her socks and shoes on, puts her lunch in her backpack. Finally ready for school her feeding tube backpack is placed on under (or over) her coat (depending her mood for the day), hooked up to her extension, set, started, and finally she puts her regular backpack on. (Yes she wears her regular backpack over the feeding tube backpack because she wants to). At this point, she runs out the door with her brothers to catch the school bus.

After lunch she sees the school nurse for a mask so she can play outside when cold or windy to help protect her lungs. After recess she returns to the school nurses office for another breathing treatment and to have her lungs listened to before returning to kindergarten.

Immediately upon returning home from school she has another nebulizer treatment followed by another acapella vibration treatment while doing her homework, playing a game, or watching a movie with her friend after school. Once this is done she is free to play (still wearing her feeding pump backpack, filled up with more fluids if needed).

Her back pack is removed just before dinner and plugged in to charge for the next school day. With dinner ready she will eat her fill of dinner. Once night time chores are finished it is now time to get ready for bed. Part of the bed time routine is to do the final sinus rinse, nebulizer treatment, acapella lung vibration treatment, flovent, night time meds, brushing teeth, get her pajamas on and head to bed. Once again, if she is in the mood she will take her night time meds orally with thickened liquids wither water or gatorade, if not then we crush, mix with thickened liquid and push through her tube.

Saturday and Sunday we follow the same routine except instead of heading off to school she gets to watch movies, play outside, play games, play computer games, and take naps in between her treatments and helping with chores.