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Our Story
NICU
7 months
Lorenzo was born at 23 weeks at UF Health Jacksonville, weighing only one pound and facing a 5% survival rate. At just seven days old, he underwent his first of many head ultrasounds, which revealed a level two brain bleed. The doctors planned to repeat the ultrasound in the future to monitor the situation. Despite numerous complications and an uncertain future, Lorenzo demonstrated incredible resilience. His underdeveloped lungs required maximum ventilator support for several months, ultimately leading to the need for a tracheostomy. Even with the challenges of being intubated for an extended period, he remained a fighter, confronting the additional complications that affected his vision and heart.
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Reaching his due date on January 14, 2018, Lorenzo continued to require significant support, prompting a critical decision. The doctors recommended transferring him to Wolfson Children's Hospital for his tracheostomy and G-tube placement. In that moment, the reality of Lorenzo's serious health issues became apparent, yet hope remained strong. Although he could not be transported for another month due to his instability, he continued to inspire those around him.
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When Lorenzo finally arrived at Wolfson Children's Hospital in February, the challenges persisted, but his spirit remained undaunted. He had to wait an additional six weeks for his tracheostomy and was scheduled to return to the operating room four weeks later for his G-tube placement. After these surgeries, he faced a significant setback, resulting in an extended four-month stay. Due to his size, he was eventually moved to the Pediatric Intensive Care Unit, showcasing his remarkable journey of strength and perseverance.
PICU
4 Months
Lorenzo spent 4 months in the PICU. Lorenzo had to have his ventilator settings low enough to be managed at home. I met with nursing agencies and durable medical equipment companies. I was not taking Lorenzo home the way I imagined, but I had support from family and different organizations the hospital put me in touch with. Lorenzo would come home by rescue with multiple people waiting at our house to get him set up.
Lorenzo at home
Lorenzo came home on August 20, 2018, requiring 24-hour care. He came home on a ventilator, pulse ox machine, apnea monitor, and oxygen. Lorenzo had to get adjusted to his new environment and he did very well. Lorenzo started in-home and outpatient therapy immediately with Early Steps and Wolfson's Children's Rehabilitation.
Lorenzo started with physical therapy twice a week, occupational therapy and feeding therapy once a week. Once Lorenzo was able to tolerate multiple sessions we doubled up on everything. Lorenzo worked hard on sitting up, crawling, walking, and eating. Lorenzo surprised his therapist at the fast track he was on.
Lorenzo is currently able to walk, communicate 10 words over his trach, and eat puree food by mouth. We still utilize his gtube at night to help make up for calories.
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Lorenzo continues to amaze the medical world with all his accomplishments. Lorenzo is a fighter and works very hard daily. He is a social butterfly and enjoys hanging with his friends at his medical daycare while I go to work.
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Our journey has had a lot of ups and downs and a lot of unknowns, we enjoy each day and take on whatever is thrown our way!
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