Gadiel is described as a loving and strong six-year-old boy. On 3/6/2020, he endured a 10-hour surgery that almost cost him his life. In the operating room, the doctor was ready to remove a mass that was on top of the pituitary gland but, upon attempting the surgery, it was discovered that the mass was latched on to the pituitary, making it difficult to remove. During the surgery, Gadiel started to hemorrhage and flatlined for 15 minutes. The doctors were successful in reviving Gadiel and sealing hemorrhage but less than 24 hours after surgery, Gadel contracted meningitis and pneumonia and endured 25 days of pain and immobility.
“Our journey took us to four code blues and many scary moments and a complete 6 month hospital stay,” said mom, Heyde.
Gadiel was diagnosed with arginine vasopressin deficiency (AVP-D, also known as diabetes insipidus), the brain’s inability to manage the body’s fluid balance, which can cause abnormally high or low sodium levels in the blood which can result in seizures, coma and can be fatal. Because of the rarity of this condition, there is no home-use device to test blood sodium making management of this condition very challenging. Often, the patient is required to get labwork in the form of venous blood draws almost daily. For children with small veins, low pain tolerance and fear of getting needles,, this is especially challenging.
Heyde says Gadiel is a “hard stick” when it comes to drawing blood. He has to be placed inpatient for every lab draw because it takes about two hours to collect a blood sample for testing. She said out of all the diagnoses and challenges, blood draws are the worst for him.
Raymond A. Wood Foundation provided Gadiel with a handheld blood analyzer in December to help with management of this condition and eliminate the difficult and painful venous blood draws.
“This gives me as a parent peace of mind to know my son’s exact levels of sodium,” said Heyde. “Also, since it’s a finger stick, it allows my son to comply in getting this collection and avoiding going to the emergency room to get a reading when I sense a difference in my child.”
Providing these blood analyzers is one of the ways that Raymond A. Wood Foundation provides support to improve the quality of life of hypothalamic-pituitary brain tumor survivors. To help us help kids, like Gadiel, please consider making a gift. Find out how.
