Diagnosed with a chronic metabolic disorder through the newborn screen (https://www.cdc.gov/newbornscreening/index.html), Nalani spent countless days and nights in Evanston Hospital's Department of Pediatrics. We were introduced to the Child Life Program almost immediately, but didn't quite realize how profound of an impact they would have on our hospital admissions until Nalani became a little older. With age came an awareness of what was happening and what was to come. With age came fear and fight--an innate and steadfast effort to protect herself, though too young to know that every poke and every intrusion were equally being made to protect her. What she knew, of course, was that they were scary and they hurt and she wanted nothing to do them. And as we tried to find this incredibly delicate balance and navigate through what felt impossible at times, the Child Life Specialists were always a breath of fresh air. Armed with knowledge and resources, they guided the both of us through a world of medical chaos so that we were informed and felt comfortable with whatever was next--surgeries, procedures, new medical professionals we'd be meeting, life at home after an admission, etc. Knowing Nalani would fight tooth and nail when it was time to place an IV, they'd make sure to be in the room with us when it was time, helping me to distract her (and oftentimes distracting me too), reassuring her, reminding her that as soon as she was done, she could pick anything she wanted from the toy box. In her more recent admissions, they were friends to her. They allowed her to feel comfortable and lifted her voice, always expanding her knowledge of what was going on with her body and encouraging autonomy. And yes, she received small gifts as well. Even the prickliest teenagers appreciate those feel good moments and distractions. We have been admitted for at least one of every major holiday since Nalani was born (including Christmas 2024), and because of the efforts of the Child Life Specialists (and the amazing nurses/doctors otherwise), have always left feeling like we were able to celebrate and make the most of the day, despite our circumstances. A couple of years ago, when Nalani was admitted during one of the summer months, we learned that donations to the Child Life Program were pretty slim. We were told there weren't many options as far as small gifts went due to the lack of donations during the summer, thus some of that ability to use those special little things to work through tough situations was limited. And while toys and games aren't necessities for kids in the hospital, they HELP. They give them something to look forward to, something to work toward, a bit of rainbow after the storm... Our toy drive was born from there! We're now celebrating our 7TH ANNUAL TOY DRIVE for the Child Life Program at Evanston Hospital! When I reached out to them last year to coordinate, I was told that the need for donations was even higher throughout the pandemic, with many of the usual donors not actively giving during this time. And while we totally understand that the pandemic has continued to cause unexpected constraints for many of us and required adjustments as to what we've been able to give, we want to make sure that this need is still being met. That said, please join us in raising money for toys and basic necessities for the Child Life Program at Evanston Hospital (and in turn, pediatric patients who are so, so deserving of these brief reprieves....) All monetary donations will be used to purchase toys and basic necessities, which will then be donated directly to the Child Life Program (check out our photos for past donation days!) If you'd prefer to donate a physical item (or have any questions), please shoot me a message via Facebook (@Torie Jackson) to arrange for pickup/drop off or mail delivery. You're also welcome to shop directly from the Amazon Wishlist (https://www.amazon.com/hz/wishlist/ls/18C7XOOY6LGZ6/ref=nav_wishlist_lists_1#) and items will be sent directly to us. ALL physical donations are required to be brand new and come from a pet-free and smoke-free environment. Learn more about the Child Life Program here: https://www.northshore.org/pediatrics/patient-education/child-life-program/ Nalani's Medical Story Nalani was diagnosed with VLCAD, a rare and chronic metabolic disorder at birth (https://rarediseases.info.nih.gov/diseases/5508/vlcad-deficiency). Essentially, her body cannot metabolize very long-chain fats (found in fattier foods) and can build up in her body, causing damage to her heart, liver, and muscles. During times of illness, fasting and/or overexertion, her body sort of goes haywire and tries to break down her muscles into energy (rhabdomyolysis), generally causing her significant muscle pain and impacting her ability to walk. She began experiencing symptoms at 5 weeks and will continue to have them over the course of her life, though they have become more manageable as she's gotten older. Her toddler and preschool years were TOUGH, and she was constantly in and out of the hospital with rhabdomyolysis. When she was around 3 years old, she had a g-tube placed with the hopes of us being able to sort of imitate IV fluids at home when needed, allowing us to avoid having to go to the hospital so frequently. This helped tremendously, but was also exhausting for me--her body responded poorly to ongoing feeds, so I'd have to give her bolus feeds every couple of hours, around the clock, for weeks on end. I was a single parent at the time and it was rough. I'll never forget the one time I was sick at the same time as she was and I ended up taking her to the hospital because I just couldn't manage it on my own. Her health definitely became more and more consistently stable, but after a year or two, she began having more complications that we couldn't seem to get a handle on. I took her to Pittsburgh to meet with one of the leading doctors of her metabolic disorder (Dr. Vockley) to see if there was any way we could get into a clinical trial I'd heard great things about. He agreed to let us into the study and we were preparing to make regular trips out of state when we were contacted by the same study here in Chicago, who agreed to let us in under compassionate use. It turned out to be a huge blessing and Nalani stabilized quickly--her VLCAD was finally under control and she went without issue or hospitalization for 5 years! During the winter of 2024, Nalani began having unexplained hematuria and higher blood pressure. We had a bunch of tests run and were expecting her to be in a significant metabolic crisis (rhabdomyolysis can cause dark urine), but she wasn't. Her VLCAD-related labs looked good and while we didn't end up learning much at the time, we did make a plan to follow up with specialists should it happen again. In June, after getting her second COVID vaccine, the hematuria came back almost instantly. She began having muscle pain (indicative of a metabolic crisis), vomiting, and pain in her lower back. I started to suspect that she was having an issue with her kidneys and got confirmation from our pediatrician that the ER was where we should be headed. This turned into a 12 day hospitalization where Nalani was in a metabolic crisis throughout and, after a kidney biopsy, diagnosed with Berger's disease (IgA Nephropathy), a chronic kidney disease. Since we're still learning about this diagnosis, here's a link if you're interested in more info on it: (https://www.mayoclinic.org/diseases-conditions/iga-nephropathy/symptoms-causes/syc-20352268#:~:text=IgA%20nephropathy%20(nuh%2DFROP%2D,filter%20waste%20from%20your%20blood.) From there, Nalani spent the next 6 months in and out of the hospital. She missed the end of her 7th grade year and was only able to attend 3 days of her 8th grade year in person before winter vacation. Just when we'd think she was on the mend and she was discharged from the hospital, she'd have a couple of good days before she'd flare again and have to go right back in. It was EXHAUSTING. The kidney disease triggered her metabolic disorder and created this uncharted territory no one quite knew how to deal with. Our medical team ended up consulting with Dr. Vockley again, whose recommendations required Nalani to stay on IV fluids much longer than normal and until she'd really stabilized. Once she was discharged from the hospital, we began weekly visits to the hospital for labs to make sure she was remaining stable and it was recommended she stay out of school until January, giving her body ample time to recover. And she did. Still, there are moments where we all feel like we're still reeling from that time in our lives. It was brutal and created changes to our world that we never could have expected. Thankfully, Nalani has been fairly healthy since, though she did end up with a stomach virus over last year's winter break and was hospitalized for about a week. Knowing that we can't predict what's to come, we just try to roll with the punches and enjoy the moments of good health when we have them.
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