Hi, my name is Tammy Cepeda, mother of Cai’Ron Limes. I am making this account on behalf of Cai and me. As most may know Cai was born 31 weeks premature with many underlying health issues that could not be determined by CHCC. Cai'Ron and I, together with his nurse, a respiratory therapist, and a pediatrician, left Saipan on April 06, 2022, to seek medical care. During the flight, Cai had multiple bradycardia despite being on the CPAP. Upon arrival, he was rushed from the airport to Rady Children's Hospital of San Diego. Cai spent the next five months in the NICU. On April 21, 2022, he was scheduled for a bronchoscopy/ direct laryngoscopy. Due to the severity of his airway, Cai was intubated and sedated for the next 5 days. On April 26, 2022, Cai was scheduled to have a tracheostomy and gastrostomy (feeding tube) put in place. After the surgery, I waited in the lobby until he returned to his room. It was so painful to look at him, wishing I could take his pain and struggles away. His face was swollen, heavily sedated, and dependent on a vent to breathe. In May, he was diagnosed with micrognathia (small jaw) and glossoptosis (tongue displacement). In June, he was at risk for venous thromboembolism, posterior glottic stenosis, and congenital stenosis of the pulmonary valve. Around this time, Ron and I have been waiting for the genetics result. On July 5, 2022, Cai was diagnosed with a pathogenic mutation called Noonan’s Syndrome (https://rarediseases.org/rare-diseases/noonan-syndrome/) which has resulted in Cai having chronic lung disease and hypertrophic cardiomyopathy. In September 2022, he no longer on the vent and discharged from the NICU and transferred to the nursing home for fragile children. Because CHCC in Saipan does not have an ENT specialist for children, we are unable to return home until Cai is ready to be decannulated. His doctor estimates about another year.

Cai is currently in isolation at the nursing home because of an infection he caught in Saipan. As a result of this infection, Cai is not allowed to leave his room to interact with other children. He does not get to join the nursing home’s monthly activities. Besides his weekly sessions with PT, OT, and school; Cai and I spend majority of the day together.