A glimpse into life with a tube fed child

As originally posted on my blog: http://josephathome.blogspot.com

Another little glimpse into life with a tube fed child

First, we have maintained power and have not had any emergencies during the recent winter storm. Yay!!! Yesterday (Wednesday), we had sleet, freezing rain, and a little snow all day. It started late Tuesday night and lasted most of the day. Late last night it all turned to snow. We woke up to the most beautiful snowfall this morning. We don't see this in Georgia very often.
We went outside and played this morning as a lot of it will melt this afternoon. The temperatures will drop below freezing again tonight causing a refreeze. I am dying to get out of the house. It's going to be interesting to see what happens with school. Scott has next week out of school for winter break. He will have two almost full weeks out of school. Joseph is out Monday for President's Day making for a week of unexpected vacation time.
During Feeding Tube Awareness week, I wanted to give a glimpse into our life with Joseph's feeding tube. Joseph receives over 500 mL of formula at night while he is sleeping. The formula is what gives Joseph the nutrition and the calories he needs to gain weight. With Short Bowel Syndrome and his multiple food allergies, Joseph doesn't eat enough by mouth to maintain weight gain. 
After mixing the formula
Carrying his feeding bag upstairs for the night
Formula primed in the feeding pump and ready for the night
This is a very common scene in the middle of the night or the next morning. Even with changing his diaper during the night, Joseph often has diaper leaks (who wouldn't if 550mL of formula is going into your body while you sleep!) or the extension comes loose during the night causing formula to spill into his bed. I have to change sheets almost every night of the week. Makes for a LOT of laundry.
On this particular night, Scott stopped Joseph's feeds during the night because his belly hurt. We gave him the remainder during his afternoon nap. Some days I will run his feeding pump during our one hour plus commute to school.
Just another glimpse into life with a g-tube.
Happy Feeding Tube Awareness Week!!

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