I had been at Hillcrest Commons (Or as I liked to refer to it, Hell-Crest Commons) for 3 months. Jillian, the nurse practitioner overseeing my care, decided that we needed to have a meeting with all of my care team and my parents.
The meeting was an absolute disaster.
Every time I tried to talk to Jillian she insisted that my disease wasn’t as bad as I said it was and that she could get me off of most of my meds, off of the IV fluids, get my port removed, get me eating again, get my GJ tube removed, and get me walking with no assistive devices. She had shared this viewpoint with my parents and got them so full of hope that they were willing to do just about anything with me or to me in order to get me there.
The crazy primary care provider at Hell-crest Commons, the nursing home I had been living at for a little over three months was in the process of killing me. She was trying to wean me off of my life-sustaining IV fluid infusions that I ran all day and night through my port-a-cath in my right chest. Over the last two weeks I had been weaned from 2 liters too 1.25 liters and each drop made me sicker and sicker.
Three days after Jillian took me down from 1.5 liters of my special combination of IV saline, potassium, dextrose, and multi-vitamins to 1.25 Liters a day, they had to rush me had been rushed lights and sirens to Trauma Room One of Berkshire Medical Center. It took them a while too stabilize me in the ER, but once they did they brough me to my room in the ICU.
Although I was born healthy, the normal-happy-kid-thing didn’t last long. At age eight, I started having trouble walking long distances and standing for prolonged periods of time. My legs would get all wobbly and the room would get swirly and I would just feel exhaustion sweep over me like a blanket covering me from head to toe. I would just want to lie down on my bed, curl up around my collection of teddy bears, and take a nap, and that was even before I developed a brain tumor.
Things had significantly deteriorated by the age of nine. By the age of ten things were so bad that I’d had my first hospitalization because it became physically impossible for me to hold down any food or drinks. I ended up with my first NJ tube and my first surgery. The diagnosis was gastroparesis. The rest of my childhood was spent … Find Out What Happens Next
