Dec 19, 2018 Latest post:
Sep 12, 2019
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
All of you followed Nolan's birth, followed by his diagnoses and surgery at Children's Medical Center of Dallas to correct the connection between his esophagus and trachea (Tracheoesophageal Fistula H-Type) and his subsequent NICU stay in Dallas. Unfortunately that surgery was not the end of Nolan's medical journey.
In early June 2018, as a result of complications Nolan suffered after a scope of his esophagus and trachea performed while he was under general anesthesia, Nolan was diagnosed with grade 3 subglottic stenosis (a 71%-99% narrowing or blockage of the airway just below the vocal chords). This is a dangerous condition and, among other issues, has caused Nolan's growth and weight gain to become restricted due to the metabolic demands Nolan's body must meet simply to breathe. Since May 29, 2018, Nolan has been under general anesthesia 7 times. Over the months since the diagnoses, there have been several attempts (and some limited success) to expand his airway via multiple balloon dilations.
Currently we have moved Nolan's care from Children's Medical Center of Dallas to Texas Children's Hospital in Houston, and so far we feel that is a decision that is in his best interests. We received fantastic care in Dallas from wonderful physicians, however Houston has a program that specializes in coordinated care for TE Fistula patients.
We are lucky to have large families and many friends who care about Nolan (and us, his parents) and wish to be kept up-to-date during his surgery and in the days/weeks to follow. We have set this journal up as a way for us to be able to keep each of you informed. Thank you all for your love, support and prayers - know that it helps us stay on our feet when we otherwise feel unable.