Enduring the End

Nightmares are often short-lived, preferably in dreams and then we wake up. Sadly, our nightmare occurred twenty-four/seven during nine long years. In the year 2000, we moved from our first tract home to a larger home east of the Phoenix area. We lived in east Mesa, Arizona near beautiful Saguaro cacti and rolling hills. Within the first year living in our new surroundings, my husband Juan contracted a variety of symptoms that left him with fevers, chills, and a significant weight loss. We were in and out of doctor’s offices for an entire year researching every specialty on the human body but no one was competent to give us a diagnosis. It wasn’t until a year later, June of 2002 that our primary care physician ordered a spinal tap. The results were astonishing and required immediate hospitalization and treatment. Juan was diagnosed with cocci meningitis commonly known as valley fever/fungal meningitis. Unfortunately, his condition required aggressive treatment to his brain. His brain was completely scarred beyond repair. I still remember the conversation with Dr. Crowe, an infectious disease specialist, when I kept asking when my husband would recover. “Mrs. Zapata. You don’t understand. Your husband will never recover from this.” Of course I understood his words. I just needed to know what we were going to do about it. Juan received treatment for an incurable condition for over a year without prognosis. Dr. Goodell, a neurologist, bathed Juan’s brain with interthecal injections of amphotericen assuring me, “We’re doing everything we can folks. I’m giving Juan more medication than I’ve given anyone. We’ll do all we can to stop the valley fever cells from multiplying.” Eventually, Dr. Goodell fulfilled his promise and the valley fever cells became dormant within several years after diagnosis. Juan’s brain would never be the same, but we were grateful to have been given more time. Our children were four, six and ten when I brought their father home from the hospital at a meager ninety-five pounds. He needed our constant care. I always imagined he’d die at home, I just didn’t know when. I trusted that the Lord was aware and that all things happen in His wisdom and order. I was required to exercise faith even though day after day, year after year, holiday and season, I’d ask myself, “Is this the year? Is this the last Christmas? Is this the last birthday?” It could have made anyone crazy enough to run away, and the thought crossed my mind a time or two, but I loved my husband and our children. I had to constantly put aside my fears and focus on the family as a whole. Juan endured several rough years of brain surgeries at from a variety of Barrow Neurological surgeons at St. Joseph’s Hospital in Phoenix. He required just the right programmable shunt to siphon fluid from his brain and drain it internally into the abdomen area to control hydrocephalus. It wasn’t an exact science as Dr. Rekate, an accomplished neurosurgeon, had made minor adjustments to correct facial palsy, crossed vision and the effects of balance and vertigo. The eyes were Juan’s biggest battle. “That’s unfair,” Dr. Rekate said as he shook his head in disappointment. The shunts were working perfectly. MRI’s reported the hydrocephalus was under control. Another minor adjustment to move the spaghetti-sized shunt line off the optic nerve didn’t improve matters either. Further attempts to troubleshoot distorted vision brought us to a pediatric eye surgeon who would cut the inner and outer eye muscles to align the eyes manually so Juan could see better. The only problem was that it was to be done in phases. After four years of hospitalizations, home health care and the emotional roller coaster in keeping Juan alive, our family was truly carried by God to endure many miracles. After accepting our fate that Juan was to be treated but never cured, we rallied together and tried to make life as normal as possible for our young family. We didn’t want to live with a death sentence. So we lived each day as if it was the last but always had a brighter hope for the future. Our goal was to create as many family memories as possible because we never knew if a particular year was to be Juan’s last.