Lucas Hanson
TrachKid Profile
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Lucas Camilo Stansbury Hanson was born approximately two months before he was due on August 17, 2009. He weighed 4 pounds 4 ounces when he was born but quickly dropped to 3 pounds 12 ounces before beginning to gain weight.
When he was born, he had a lot of problems, from bleeding in his brain to bruising on his body, to low blood pressure, lack of breathing effort, and eventually jaundice. In addition, the doctors described him as floppy or hypotonic (having low muscle tone), and this condition remained as some of the other early challenges were resolved.
After spending a week at the Washington Hospital Center he was transferred next door to the Children’s National Medical Center and stayed there until the day after he was three months old. The Neonatal Intensive Care Unit (NICU) at Children’s brought in a litany of specialists who worked to diagnose and treat Lucas, including neurologists and geneticist; they performed many tests on Lucas but were unable to determine a diagnosis. In early October Lucas had two surgeries to place a tracheostomy (for breathing) and a g-tube (for feeding). Though he’s getting stronger he’s still too weak to breath without assistance or feed orally, and therefore these procedures were done make his development easier.
On November 18, Lucas came home from the hospital, a major triumph after weeks of battling with the insurance company to allow for his discharge. When we brought Lucas home he was making slow but steady progress, and we still believed that his hypotonia was likely related to the bleed inside his brain. However, after a few months home we began to wonder again if his lack of movement was due to a specific condition that doctors would someday be diagnosed. In early February we took Lucas into the emergency room because of bout of consistent vomiting. It turned out that he had a dangerously low blood sodium level which was eventually resolved by adding sodium chloride to the breast milk he consumes. While he was in the hospital, however, we were visited by the neuro-muscular specialist who diagnosed Lucas with a rare muscle disease called Myotubular Myopathy . It was devastating news for us but at the same time helped us continue to adjust to the challenges that lie ahead for our family.
Lucas’s path continues at our home in the Mt. Pleasant neighborhood of Washington DC, and we will continue to update his blog www.lucascamilo.com as a way to share news about Lucas’s condition, reflections about our own journey, and as a journal that we’ll someday get to share with Lucas.
History
- Blog
- View recent blog entries
- Member for
- 2 years 4 weeks
Location
- Country
- United States
- State/Province
- District of Columbia
