Dear Family and Friends,
Everett and I were driving home from school on Thursday, when he suddenly said, “Mama, I’m sorry that I’m sick and that you have to take me to the Children’s Hospital.” My heart immediately sank and the tears welled up quickly. My voice broke as I replied, “Buddy, you don’t ever get to apologize for being sick or for me needing to take you to the Children’s Hospital.” You see, we’ve been chasing mystery symptoms with Everett since January. Since then, we’ve made so many trips to CHLA that I’ve honestly lost count. We’ve been through four doctors and countless imaging studies, labs, and tests. We’ve been panicked and alarmed, frustrated and pushed-off…it hasn’t been a great year of interactions with doctors. But we have persevered as we always do where Everett is of concern.
In January, Everett began having intermittent blood in his urine. Like obvious and copious amounts of blood, without any other symptoms. His pediatrician, after testing him for a few viruses which can cause blood in the urine, was stumped and encouraged us to contact his surgeon at CHLA. He wanted to verify that this symptom was not somehow connected to his abdominal surgery last August. After speaking with the surgeon, she encouraged us to see a Pediatric Urologist. Getting that approval through our insurance took the better part of a month. We made our first trip in the spring, only to have a very negative experience with the doctor. We actually walked out on the appointment, without answers and feeling as if the entire day of missed school and work was a complete waste time. Our next step was to move on to a Pediatric Nephrologist (kidney doctor).
Again, getting the insurance approval took some time. And while we waited, the frequency of the bleeding escalated until it was almost all day, every day. We were scared. As a nurse, I was concerned about his kidney function. As a mom, I was concerned he was loosing too much blood. We did some intermittent monitoring of these things, all of which remained normal. We eventually returned to CHLA where the Nephrologist believed Everett might have a very rare vascular condition called Nutcracker Syndrome (absolutely hysterical name). Under her guidance, we had a bunch of imaging studies done both locally and at CHLA. We were absolutely convinced that he fit the diagnosis. However, in June, we were disappointed to find that he did not have Nutcracker Syndrome…and we started back at the beginning again. The Nephrologist eventually ordered a specific test, which only one company in the United States can perform. The insurance approval took another two months and on Monday, after another trip to CHLA, we finally got the results and a diagnosis.
Everett has chronic kidney stones. He is passing stones almost constantly. And he’s making two out of the four types of kidney stones. Thankfully, he has little to no pain when he’s passing them. Call that a benefit of his many abdominal surgeries, he just doesn’t perceive pain the way most people do. And his lack of pain was the main reason that the Nephrologist eliminated kidney stones as a possibility when we first saw her over six months ago. But as is typical Everett, the symptoms he presents are never classic or textbook. We are beginning some big dietary changes hoping it helps lessen the amount of stones. Some of this may be futile as we’ve been told that preemies are at risk for developing kidney stones, and micro-preemies are at an even greater risk. The kidneys develop until 36 weeks gestation, but stop developing at birth, so Everett is 11 weeks shy of proper kidney development. Because the kidney system is redundant (two kidneys), he has proper kidney function, but they also don’t work like typical kidneys do. Add to this that we’ve also been told that having an ileostomy and a small bowel resection (Everett has had both) add even greater risks for developing kidney stones. This is likely to be a lifelong struggle.
In response to the amount of school Everett has missed because of appointments, tests and trips to CHLA, the school nurse suggested a Chronic Illness Plan. This plan acknowledges that the child has a serious illness and allows the parent to excuse their absences instead of requiring a doctor’s note (which can be hard to obtain). Signing papers that stated our son is “chronically ill” was upsetting…very upsetting. As if it somehow showed, in black and white, what his prematurity has done to his body. But signing it was what was best for Everett and I’ve learned to be thankful for it.
So many times this year I’ve felt defeated and ignored…as if I was screaming in a room full of people telling me to be quiet. I actually had two doctors tell me that having a nine-year-old peeing blood just “isn’t that big a deal.” The truth of the matter is, being a mom of an older micro-preemie can been isolating. There are these constant, small battles that seem to come out of nowhere. Battles with the school, battles with the pediatricians, battles with specialists and insurance and access to the things I think he needs. Everyone seems to say “no” before they ever say “yes.” It can be exhausting. Out of that exhaustion, I’ve decided to start a older preemie/NICU parent support group. A place where we can discuss the issues facing our school-aged children and fill the knowledge gap about the inherent risks their births have given them. It will be a place to feel understood by people who have walked a similar path and in the strength of numbers, we will learn together how to advocate for our childrens' unique needs.
We’ve never allowed Everett to wallow in his diagnoses (we added asthma to the list earlier this year) or in the way his body works. We acknowledge his struggles, but also push him to learn how to work because of them, not in spite of them. In all things, we use his frustrations as motivation to work harder to find a unique way to accomplish what needs to be done. We’ve focused on remaining always thankful for his life and the opportunities he has to live it. At the conclusion of the conversation that I mentioned in the beginning, Everett said “You know mom, this is just how God made me. And I know someday I will understand why He made me this way.” In the moments when I feel like his burdens are too great, I remember that God built him intentionally and perfectly for this life and that He purposefully and lovingly gave him to us, who will never stop fighting for him. Everett teaches me so much about the person I want to be. I continually strive to be the mother he deserves. In these small moments, I remember with gratitude, everything his prematurity has given to me.
With Hopeful Change,
The Bollinger Family
