Family House Stories: Luke and His Battle With Biliary Atresia – How Family House Helped Us Get Through the Toughest Time of Our Lives

by Sarah, Family House Mom

Published on July 11, 2022

I didn’t know about Family House before 2020. And I had no idea it would become such a huge part of my life. 

My son Luke was born on March 5, 2020, and my husband and I were blissfully unaware that our sweet baby boy’s health would soon decline. 

In May 2020, Luke was diagnosed with a disease we had never heard of — biliary atresia. We went down a rabbit hole of information overload trying to educate ourselves on Luke’s diagnosis. To go from having what we thought was a healthy baby to learning that he had a rare liver disease was devastating. 

We began a series of prolonged hospitalizations and countless emergency room visits. We were cautiously optimistic following his Kasai surgery in June 2020. By September 2020, the procedure had failed, and Luke’s health rapidly deteriorated during his last stay at Kaiser Roseville PICU. The decision was made on September 30 to transfer Luke via critical care ambulance to UCSF Benioff Children’s Hospital for a higher level of care and urgent evaluation for a liver transplant. 

We thought Luke would die, and seeing him intubated and sedated was gut-wrenching. But we knew UCSF was where he needed to be, and the team of specialists did their absolute best and succeeded in stabilizing him. At 3:00 a.m. that first night, we stayed at a hotel in San Francisco and paid an exorbitant rate. That’s when we realized we hadn’t thought of where we would stay for the next several months during Luke’s hospitalization. 

Driving back and forth between UCSF and our home for almost two hours one way was not going to work. The Ronald McDonald House within UCSF was closed due to Covid. Hotels certainly were not an option financially, and staying in the hospital room 24/7 was a bleak thought. Back at the hospital the following day, our social worker told us about Family House. It was like a weight lifted to find out there was free housing less than a half-mile from the hospital for families of critically ill children being treated at UCSF. 

We checked into Family House late on October 1 and were mentally and physically exhausted from stress and sleep deprivation. I remember coming in and being greeted warmly by the caring staff. The process was smooth and easy, and the accommodations were immaculate and comfortable. It is hard to put into words how grateful we were to have a peaceful place to recharge away from the stress of the hospital. 

Family House truly became our home during Luke’s hospitalization. Due to Covid, UCSF had a one-parent policy during Luke’s stay there, so my husband and I alternately stayed alone at Family House. But there was something comforting knowing we were there with other families going through similar situations. We would write notes of encouragement to each other on the whiteboard in the room. 

Every day on my way to the hospital, I would grab breakfast snacks at the Family House kitchen. After months of erratic eating, we finally had food easily and quickly available. Sometimes I would return to Family House between 10:00 and 11:00 p.m., and there were always to-go dinners in the fridge. The basics such as meals, doing laundry, and getting a good night’s sleep honestly felt like luxuries.

Family House brought normalcy to such a difficult time in our lives. Sometimes on the weekends, my husband and I would bring our five-year-old son Zane to Family House, and just being together watching TV in the room allowed us to feel like a family again. Zane loved Family House and was so excited when he got to pick out a toy for himself and his brother from Fozzy’s Toy Room.

October rolled into November, and Luke’s liver transplant was performed on November 5. It was an amazing success, and two weeks later, Luke was well enough to be discharged to Family House. It was like bringing him home. We were at Family House throughout the holidays and were appreciative of the Thanksgiving meal delivered to our door and all the volunteers that made it happen. We brought Zane to be with Luke and see the Christmas decorations in December, and the boys just loved the large holiday inflatables in the outdoor area. 

After a month of monitoring post-transplant by UCSF, Luke was ready to go home. It’s hard to put into words to effectively express our gratitude for having Family House available to us. It was the height of the pandemic while our baby awaited a liver transplant. To say we were stressed is an understatement. But Family House provided exactly what we needed to feel secure — a welcoming home away from the hospital, meals, laundry facilities, and the caring staff that made it all possible. 

We will always be grateful to Family House for allowing us to focus on Luke’s recovery and remove the worry of paying for long-term housing. I can truly say Family House was a bright spot for us during a dark time. Thank you for all that you do.      

Family House San Francisco is an independent non-profit organization led by a professional staff and board of directors dedicated to providing residential services free of charge to qualifying families. Since we receive no financial support from UCSF Benioff Children’s Hospital or any other public entity, we rely solely on the generous contributions of individuals, corporations, and foundations.

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