Setting Up My Own Tube Feed at Age Twelve

Once upon a time, I was fiercely independent. Starting at age eleven I did my own laundry. At twelve years old I started managing my own NJ tube feeding. My mom taught me how to disconnect the old bag of tube feed from my NJ tube. Then I had to flush the tube with a syringe of water and clamp it shut. The next step was to fill a bag with cans of tube feed and thread it through the pump.

After that, I had to prime the pump. That meant I had to run tube feed through the line to get all the air out. The pump would run super fast until there was no air left in the line. Then I programmed the pump to run the full bag of 1,080 ml of tube feed. It would go into me over 24 hours at a rate of 45 ml and set it aside.

Tube Feed Set Up then NJ Tube Meds

Even though I was only twelve years old, I would then proceed to give myself all my own medications. This was not an easy feat. I had to crush all the tablets with a pill crusher. Then I had to open all the capsules and measure out all the liquids. After that, I had to mix the slurry of medication with hot water and draw it up into a syringe. Then I had to draw up a second syringe of 10 ml of water. At a slow steady rate, I had to inject the medication into the end of my NJ tube. I followed up the meds with a syringe of water.

IV Fluids, IV Meds, Drainage Bag, Catheterizing Myself, and GJ Tube Feed

At that point, I hooked the end of my NJ tube up to the new bag of tube feed. The tube feed was all ready to go. I just had to hit start on the feeding pump. Then I put the NJ tube feed and pump into my backpack and was ready to go.

But I had to pause the pump and do meds four times a day.

Things got more complicated as I got older and got a port-a-cath. Then I started to have to deal with prepping IV fluids and tube feed. I also started taking IV meds that had to be prepped with a sterile technique.

When my bladder became paralyzed at age 15, I learned how to catheterize myself every time I needed to urinate. When I got my GJ tube to replace my NJ tube. I learned how to use the drainage bag all on my own.

Losing Jackie, Gaining Melody

So when my Small Fiber Autonomic Polyneuropathy got so bad that I could no longer care for myself, I felt quite defeated and helpless. But then Jackie came along to take care of me.

Jackie made me feel like she was my big sister and just wanted to help. I felt less like an invalid around her. She worked for me for at least two years. When she told me that she was leaving to go to nursing school I was devastated.

Melody, was my PCA that replaced Jackie, and she actually turned out to be a major blessing in my life.  She loved to style my hair just like Jackie had. Sometimes she would take me out of the apartment. We would go for walks around the neighborhood. It was just like the old days with Nan (Only she never stole flowers off anyone’s lawn!). Melody washed my hair three times a week . We played beauty parlor so that I felt like I was getting the royal treatment.

Showering With IV Fluids and Tube Feed

Even though showering entailed a whole lot of work. We had to pause, disconnect, and cap off all my IV lines. Then we had to spend twenty minutes covering up my accessed port-a-cath in my chest. Melody still made sure I got a shower every day.

Melody never complained about anything. She did however have lots of long serious talks with me. We discussed how difficult it was to have a degenerative condition and watch yourself lose more and more function. I told her how I even set up my own tube feed starting at age twelve. Melody was always patient, and reassuring, and knew just what to say to make me feel better.

What was really fabulous was that she and Jeff shared a similar raunchy yet hysterical sense of humor. However, at the same time, she could flip back to being completely professional.  Melody and Jeff loved to go take cigarette breaks together between all of the essential tasks. They would go outside for up to twenty minutes at a time. Through my window, I could see them talking and puffing.  I couldn’t hear what they were talking about, but from their body language, I could tell that it was a strictly buddy-buddy session.