Meet Tommy: 2022 Family Advocacy Day Champion

Tommy is participating in Speak Now for Kids Family Advocacy Day from June 12-14. Through this event, Tommy and his family will discuss his health journey, Children’s Hospital Los Angeles’ role in providing him with necessary health care services, and why the public and our elected officials must invest in the future of patients like Tommy.

Tommy’s mother, Cara, went into premature labor and after eight days she delivered Tommy at 23 weeks gestation. The original NICU was unable to provide the treatment he needed after about two months. However, they managed to keep her in labor for several days. The original NICU was unable to provide the treatment he needed after about eight weeks.

“They told me he would die,” says Cara. “So, I transferred him to CHLA, which provided nitric oxide and he lived. He came home five months later with a tracheostomy and a home ventilator.”

Currently, Tommy receives nebulizer treatments and inhaler steroids two times a day. “When he is sick, he needs more breathing treatments and sometimes needs increased oxygen or more suctioning, but he has outgrown the ventilator,” says Cara.

“Having a micro preemie radically changed our lives,” says Cara. “It was 222 days before he came home. Tommy has medical needs I didn’t even know existed before this happened. He has improved greatly, and we hope for nothing more than like having severe asthma by the time he is five years old.”

Tommy’s biggest challenge is expressive communication. Even with capping his trach, he has had difficulty learning to speak because his brain experienced an oxygen deprivation related injury.

The COVID-19 pandemic was especially tough on Tommy and his family. They struggled to find home health nursing and Tommy’s grandfather had to move in with them for the first six months to assist. Due to insurance miscommunication, the family temporarily lost nursing care. 

“We should’ve been getting 24-hour in-home nursing, but we never got more than 16 hours a day, and never weekends,” says Cara. “Thankfully my son qualifies for a Medi-Cal waiver which has allowed us to not go bankrupt and lose our home.”

Tommy enjoys music, playing at the water table, coloring, reading books and watching Cocomelon.

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published this page in Blog 2022-06-06 13:34:48 -0400