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My Story
NICU
7 months
Lorenzo was born at 23 weeks at the UF Health Jacksonville weighing only one pound with a 5% survival rate. At 7 days old Lorenzo had his first of many head ultrasounds, and at that time Lorenzo was diagnosed with a level two brain bleed. The doctors would repeat the head ultrasound in the future to see if it resolved itself. Lorenzo had many complications and the future was unknown. Lorenzo's lungs were underdeveloped and caused him to be on a ventilator requiring maximum support for many months and eventually needing a tracheostomy. Being intubated and on a ventilator for so long added complications to his underlying conditions with his vision and heart.
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Once Lorenzo reached his due date January 14, 2018, and still required a lot of support from a ventilator a decision had to be made. The doctors said Lorenzo would be transported to Wolfson's Children's Hospital to receive his tracheostomy and gtube, at that time reality sunk in that Lorenzo was still very sick. Lorenzo was not able to be transported for another month due to not being stable.
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Lorenzo arrived at Wolfson's Children's Hospital in February and the NICU roller coaster did not stop, Lorenzo had to wait another 6 weeks to receive is tracheostomy and would return to the OR in 4 weeks to receive his Gtube. After the surgeries, Lorenzo had a major setback requiring an additional 4-month stay. Due to Lorenzo's size, he was moved to the Pedicatric Intensive Care Unit.
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
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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!
