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Manny Matters
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GulfVAN
Florida Gulf Coast Vascular Access Network
Manny Matters is GulfVAN's community outreach program that strives to create awareness about vascular access with nursing students and the community. Nursing students are taught little, if anything, about vascular access in school. Our network wants to try to "fill in those gaps" by actively recruiting nursing students to come to our meetings free of charge. At these meetings they will receive a wonderful educational experience and have the ability to ask questions and learn from the vascular access professionals in our area. Manny was GulfVAN's first Person of the Year. He puts a smiling face to our mission of understanding why vascular access is so important. This is our way of saying Manny Matters! #MannyMatters
This is Manny.
Everyone who meets him is enriched by the experience.
If you were to look at his medical file, you might wonder why we try so hard to give him the best quality of life possible. But if you ever meet him, you’ll leave wondering, “What else can we do to support him?”
Manny was born to very young, immigrant parents. By 8 months of age, he was failure to thrive and the birthparents chose to place him for adoption. He became the youngest of our 6 children. All 5 of his older brothers and sisters are also adopted.
The first time we met Manny, we just “knew” there was something special about him. You could see the LIFE in his eyes. But he also had many, many complex unknown medical conditions. Eventually we discovered he has Merosin Deficient Congenital Muscular Dystrophy (LAMA2). This explains why he is extremely hypotonic, cannot use his arms or legs and why he cannot sit. But it doesn’t explain everything. He has an inability to eat food by mouth or by tube feeds.
By the age of 2, he was given a Central Line in his chest. He gets all his nutrition through that line. It’s called Total Parenteral Nutrition (TPN), a form of IV hydration/nutrition.
This line increases his risk for blood infection. In fact, only 2 months after getting this line, he went into septic shock and almost didn’t survive. It was at that point that I determined I would learn EVERYTHING I possibly could about TPN and central lines and their care. That’s why I’m now the Patient Advocate on the Board of the AVA Foundation and I do speeches around the country talking about the important role that Vascular Access and bedside nurses play in Manny’s life.
One thing that has shocked me by being Manny’s mom is … some people don’t see the value in his life (especially true of the medical professionals). So my job has become to show how … MANNY MATTERS.