Graysons medical journey

The day before Grayson turned 1 month old he was admitted to St. Francis Children’s Hospital for dehydration. After receiving countless amounts of iv fluid, it was thought that maybe there is more going on. He was suspected to have had Diabetes Insipidus. (Diabetes Insipidus isn’t like the diabetes many are most commonly familiar with. Diabetes Insipidus is a blood sodium imbalance. ) On Christmas Eve of 2018, Grayson was given his first dose of DDAVP( a synthetic hormone to signal his kidneys to hold onto some of his fluid). Essentially he had urinated his self into dehydration. After his first dose of ddavp, Grayson went into his first confirmed seizure, which led to a code blue. Grayson was next admitted to the PICU, where he continued having seizures and we continued to fight the sodium levels- as is it very difficult to dose DDAVP for an infant. During our PICU stay Grayson underwent an extensive amount of testing to help better understand what exactly was going on.



Just a few days after Christmas Grayson was diagnosed with Periventricular Nodular Heterotopia, Schizencephaly, seizure disorder, Diabetes Insipidus, Hypothyroidism, Adrenal Insufficiency, Panhypopituitarism, Septo Optic Dysplasia, Optic Nerve Hypoplasia, and Blindness.

For the first year of his life he was admitted to the hospital every 3 weeks if not more, due to the sodium imbalance. He is definitely the strongest person I have ever met.

Fast forward to January of 2021-

1/8/21 Grayson goes in to have a simple procedure done on his throat(T&A) to help with his central and obstructive sleep apnea. During his 1 week recovery stay in the hospital he was found to have high blood pressure, an enlarged liver and spleen, and Restrictive Lung Disease. At discharge Grayson was sent home on 1 liter of oxygen at night and as needed throughout the day.

Fast forward to today-

5/18/21: Grayson has gained almost 30lbs, is now requiring more oxygen at night as well as during the day time. We have met with cardiology about his blood pressure but the cardiologist didn’t feel comfortable treating him due to him being so medically complex already(it’s risky, I respect his opinion). As I type this we are sitting in a room at SFC waiting for air ambulance to come get Grayson and me (mom/Makayla). After endless efforts from Graysons primary care team, Grayson was finally approved to get out-of-state treatment. We are waiting to be flown to Cincinnati Children’s Hospital in Cincinnati Ohio, where we will meet with a full team of some of THE BEST doctors in our nation. Grayson will undergo another extensive evaluation to see if we can figure out 1. Why he is gaining weight so fast, 2. Why his breathing has plummeted so fast all of a sudden, and 3. What else we may be missing. I am riding in the air ambulance with Grayson, and later this week Grayson’s dad (Tyler) is planning to drive up and be with us. It’s very difficult right now with the way COVID has everything. I will be out of work until Grayson returns home, in a stable condition. Life will continue to go on, which is what led me here, to GoFundMe. Bills will still need to be paid with us gone.