Feeding Tubes Suck.

 As I was getting ready to do my morning feed on Friday, my feeding tube broke. I knew it was coming, weirdly, my body seems to know when it’s time for the feeding tube to break. Unfortunately, I have gone through this many times before. I’m actually prepared now. I have backup tubes since I have learned that acquiring the actual tubes is the main issue. Plus, I have learned that pretty much every ER nurse or doctor has no idea what to do or how to do anything with feeding tubes. A fact that leaves patients and their families that extremely frustrated.

This time around, I calmly called my GI nurse Sherri.  Next, I gathered two backup tubes. For some unknown reason, my stomach does not react well to feeding tubes that use a balloon to hold them in place. The balloons in my own stomach always pop. It’s not like it happens right away it’s really random but for whatever reason, my stomach just pops the balloon. This has actually happened to me with multiple people. It actually makes a loud popping sound. I immediately know what has happened.

Since my belly doesn’t get along with balloons, I have to use a tube that is balloon less. It seems that only one manufacturer makes balloon less tubes, AMT.  Their Mickey One low profile button tube is the one type of feeding tube that I can use.

The Mickey One rareness makes the tube never being available at ERs. Hospitals that don’t have a gastric department most likely know nothing about this type of tube.

Now, I know to have a backup balloon tube as well as a balloon less tube. After calling my GI’s nurse, Sherri, I learned that Dr. Levine doesn’t work on Fridays and can’t see me until Monday. It’s a BROKEN Feeding Tube, it’s how I EAT. Why is waiting over a weekend to eat acceptable?! 

Okay, I’m being dramatic because there are ways to still do a feed with a broken feeding tube. Those ways requires tape and a feeding extension. After talking with the nurse, mom makes her way to pick me up and go to the ER. 

First, we went to the urgent care in my GI docs building. Even though I think they have placed a balloon tube for me before, they said that they don’t have any one on staff that could place a feeding tube. So Mom and I got back in the car to go to the main hospital. After waiting in the ER for a couple of hours it became abundantly clear that the docs and nurses at the main hospital had no clue about how to help me. Even though I was prepared with two backup tubes, incompetent people ruined my weekend.

I used to believe that doctors could always fix you or at least know how to help. For over 10 years I have learned just how wrong I was.