Following Dr. Green’s advice; I had been to the ER multiple times in the three-month gap between my second and third appointments. She had instructed us to go there every time the top number (systolic) of my blood pressure went over 200, or my bottom number (diastolic) went over 110. The thing was every time I was at the ER they would order blood work and my low potassium would force them to admit me to the hospital at least overnight to get me replenished.
Because my low potassium would be critically low and because it wouldn’t respond to oral potassium, they would usually have to admit me. I would either go to the ICU, critical care step-down unit, or a telemetry unit. That’s because potassium affects the heart and can be deadly if not immediately treated. It can cause fatal heart rhythms. A couple of times endangering my heart. Low potassium can be very serious if not properly addressed. It can cause fatal arrhythmias. A couple of times they caught me going into v-tach . I would feel like there were butterflies in my throat trying to rise up and the heart monitor would start going off like crazy. Then there would be the sounds of running footsteps and people racing into my room pulling a crash cart behind them.
My love for Jeff went beyond any love I had ever felt before. I just wasn’t aware of it. What I was aware of was the fact that goodbyes are one of the hardest things in the world, and I never wanted to have to say my goodbyes to Jeff.
All of Jeff’s doctors assured us that he was at the top of the liver transplant list. They kept telling us that he and his mom could get a call any day to drop everything and rush down to Umass Memorial Medical Center to be prepped for the most major, most life-changing surgery of his life. A surgery that could take his life span of months to a couple of years at the most, and add a lifetime onto it.We were in a race against time. There was a strong possibility that his liver cancer had returned. We were waiting on an appointment with a GI doctor, Dr. Xander to go over his scans. The even more frightening reality was that if his cancer actually had returned he would be immediately removed from the cancer list. I might have to say my goodbyes to him. I usually tried to put all thoughts of his mortality out of my head and just enjoy him, in the moment.
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. 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.
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