Luca Raehsler

 

Hello, world! My name is Luca Charles Raehsler, and I was born on June 8th, 2022. Before I entered the world, I was diagnosed with a congenital heart defect called tetralogy of Fallot (TOF), which required frequent appointments at Mayo. After birth, I had a 5 day stay in the NICU, where my heart was proving well enough to go home until needing my repair later down the road. Shortly after birth, I tested positive for a disease called DiGeorge syndrome, which means there is a portion of my chromosomes that is missing and can have a wide range of side effects, one of which is my TOF. After being discharged from the NICU, I struggled to eat and cry and started to have heavy, raspy breathing that we thought was associated with my TOF. On June 23rd, while getting ready to go to bed I had a choking incident at home and had to be rushed to HCMC in Minneapolis. From there, I was transferred to the PICU (pediatric intensive care unit) at Mayo Clinic. After a week in the PICU, I was transferred to the cardiac ICU as the plan was to have a BT shunt surgery as a temporary fix to my heart until my full repair. As my amazing team at Mayo worked together to figure out what was going on with my little body, they decided it would be best to have an airway evaluation procedure prior to my shunt surgery. It was discovered during the airway evaluation that my DiGeorge syndrome had caused tracheal stenosis and laryngeal webbing. For me, this meant that my airway was smaller than a 24-week preemie and there was tissue that formed between my vocal cords. Due to this, the doctors decided to cancel my planned heart surgery to place a BT shunt and perform a tracheostomy instead. This explained so many things to my doctors of why I choked, struggled to eat, needed a feeding tube, could not make much noise. My surgery was June 30th and I continuously surprised my doctors with the improvements I have been making each day! My doctors hope that with the placement of my trach, my heart will be healthy enough to hold off on my full heart repair until 3-6 months of age. Once I am stable enough to go home, I will require 24-hour care at home to ensure I stay safe. My goal is to have my trach in for 18-24 months, which will allow my body to grow enough so that the doctors can perform a full airway reconstruction surgery allowing me to be trach free! I continue to prove myself over and over to be the strongest little baby and still give my mom and dad smiles to let them know I am okay and we will get through this as a family. I appreciate all the prayers and support I have received from so many people, many of which I have yet to meet.

 

All funds raised will go towards Luca’s ongoing medical needs. Mom will likely have to take an extended maternity leave, as well as time off during Luca’s future surgeries and recovery times.

Thank you from all of us, 
Greg (Luca's Grandfather)