Since moving to Patheos this summer, I have tried my best to not write about my son. However, today is a special day. My son is six years old. Most parents celebrate and get excited about their children’s birthday. This year I’m not only excited, but I am grateful my son is alive. Since last December, my sweet little boy has undergone three major brain surgeries and open heart surgery. He had four long hospitalizations, several significant complications, and lived through a ton of pain. Today he is here with us. He survived, and he’s thriving.
Today instead of feeling sad about our past year, I am celebrating the fact that my kid survived a living hell. He lived in heart failure for three years. His brain needed three surgeries to repair and manage fluid that could not drain. During this time his stomach shut down, and we had to feed him directly to his intestines.
However, today he is on the mend. His heart is perfect! Thanks to a shunt in his brain, the water drains off his brain. He no longer has neuropathic pain, and his stomach function is back to his baseline.
Today I celebrate science. Thanks to science my son can live to be an adult. A by-pass machine kept him alive while they operated on his heart. Advancements in pediatric cardiac surgery enabled surgeons to restore and augment a broken valve inside his heart. Medication designed to manage heart failure helped my son’s body drain off the excess fluid his body stored.
Brain surgeons utilized technology to stabilize his spine and neck to operate on his neck and skull. Ultrasounds and CT scans allowed surgeons to thread a catheter into his ventricles deep inside his brain.
Medical device companies developed a tiny valve that measures the pressure inside his skull. As pressure increases, a small valve placed on the top of his head opens to drain the excess fluid.
A small catheter runs from the top of his head to his neck, and down the chest. The catheter ends in his abdomen. Fluid from his brain drains into the open space of the abdomen. Then the body absorbs his cerebral spinal fluid.
My son has a bypass system that helps his brain work. Because of this system, my son no longer lives in debilitating pain. Science is amazing.
Gastric tubes help him eat, burp and control his stomach issues. Medications maintain his endocrine system because he was born without one. Science is my son’s best friend.
On our special day, please join us in thanking science and medical staff for keeping children like mine alive. Unless you have a chronically ill child, you don’t get how many advancements exist to help kids grow and survive.
Also, please join me in wishing my son a very happy birthday. He can’t be in school due to his fragile health.
Please leave him A note, emoji, or even a GIF to wish him well.
Happy Birthday, Bubba!
Mommy and Daddy Love You.