In 2018, our infant son Holden was discharged from Children’s Wisconsin after surviving a near-fatal heart event. He spent four days on life-support and six weeks in the hospital. We were told Holden would continue with follow-up therapy and appointments with Children’s Wisconsin for five years to ensure a complete recovery.
At that time, five years felt like an eternity. But here we are in 2024, and I’m writing this from Holden’s room on the 11th floor of Children’s Wisconsin, where my energetic, happy, healthy 5-year-old Holden is currently playing his favorite Mario video game. We are here to tackle the final step in that full recovery — his feeding tube.
When Holden was 3 months old, I noticed he seemed unwell. Just hours later, I was on my knees in the Children’s Wisconsin Emergency Department as Holden’s heart stopped beating, the code blue alarm sounded and CPR was called.
We later learned that Holden suffered from a heart arrhythmia and that, unbeknownst to us, his heart had been beating rapidly for a prolonged period, had weakened and failed. The trauma team saved his life that day. Once Holden was stable, I saw doctors and nurses with tears streaming down their faces, and I realized just how incredibly lucky we were to have this world-class care and dedicated medical professionals right down the road. Holden would not be here without it.
Since those difficult days in 2018, Holden has been cared for in multiple areas of Children’s Wisconsin, including the Herma Heart Institute, Physical Medicine and Rehabilitation, Nephrology, Physical and Occupational Therapy, Neurosciences, Gastroenterology and others. All these areas work together to make certain our Holden is thriving, and each area treats Holden and our family like their own. We even saw Orthopedics recently when Holden broke his arm at recess — a common injury for a healthy and active boy!
Uncoordinated eating was a side-effect of Holden’s heart event and he’s been G-tube fed these past five years. But Holden is a fighter and determined to have his tube removed. Multiple times a month we’ve come to the Children’s Wisconsin Milwaukee Hospital to work with a feeding therapist and the Gastroenterology team.
Weeks ago, we got the great news that Holden qualified for “feeding camp” — an intensive, two-week, inpatient program designed to wean Holden from his G-tube completely. So here we are today, five years later, about to be discharged for the second time after a successful two weeks and NO more tube feeds! We are filled with so much gratitude and appreciation for this place that saw us through the darkest days of our lives and the long journey to full recovery. Children’s Wisconsin is the place that gave us EVERYTHING.
We are thrilled to be part of the WKLH Miracle Marathon for Children’s Wisconsin presented by Mars Family Foundation this year. Listen to the Miracle Marathon live on 96.5 WKLH and WKLH.com May 16-17 to hear incredible stories from kids and families just like ours, who have received lifesaving and life-changing care from Children’s Wisconsin.
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