Make-A-Wish sent us to Hawaii in April. We felt like it was the celebration after the past couple years of sorrow and struggle. After months of dreamy kidney health, it now feels like the trip was a lovely end to yet another chapter in our ongoing novel. A couple months ago, someone jokingly asked how they could get a free trip to Hawaii. I laughed and said all they had to do was have a dying child. I didn't think anything of it at the time. It was only later that, while outwardly I was smiling and joking, inside the exchange stung. Up until our trip to Hawaii, we didn't come face to face with the reality that Evelyn is always on borrowed time. Evelyn's official status of "end stage kidney failure" (which qualifies her as critically ill and therefore a candidate for a wish) felt remote and casual--something I could dismiss for the most part. After nine months of dreamy health, in July we hit a rough patch with a UTI that turned septic (E. coli went into her blood). She was admitted to the hospital for a week. Her nephrologist was quite concerned by how quickly the infection went into her blood so we did some tests (an ultrasound and VCUG for those medically interested) and found that her kidney reflux, which had caused much of the damage to her native kidneys, was now inflicting damage on the transplanted kidney. Needless to say, Keith and I both were quite shaken by this news. We asked ourselves (and the doctors) if this meant we were back to square one. I was ready to hit the panic button (Was dialysis right around the corner?). Our transplant team sent us back to urology for their assessment. They recommended a non-invasive temporary treatment called deflux (Essentially, they insert some filler into Evelyn’s ureter to stop the urine from going back into her kidneys). We chose to do this instead of the more risky but more successful open surgery of reattaching the transplanted kidney to her bladder. The surgery didn’t go as planned. In rare cases the deflux filler can block the flow of urine to the bladder and cause a back up into the kidney. Poor Evelyn is one rare girl. So we were back in for emergency surgery a couple nights later to remove the blockage and place a stint (a plastic piece between the kidney and bladder. She had one right after transplant, as well.) This means that we’ll be back in to remove the temporary stint on Halloween, her first anniversary.
Even though Evelyn will spend another Halloween in the hospital, she is doing wonderfully. We couldn’t be happier with this past year. She is lively, energetic, and sometimes mischievous. She's reached the 75% in height. Her g-tube is out and she meets her 1.5 liter of liquid per day goal all on her own 3 year old will. The past few months were a sober reminder that Evelyn is chronically ill. She (and her family) always live under a shadow of illness that never goes away. But just like when the clouds cover the sun on a summer day, then move on and the sun reappears with warmth and glory, so do our lives.