Khai loves to play peek-a-boo and according to his mom, Julia, and his grandma, Kathy, he’s pretty fly for a small guy!
This little warrior turned one on February 10th. And his first year has not been so easy.
When I shoot for a family staying at Ronald McDonald House I send my storytelling questionnaire ahead of time because my goal is to use photography to tell their story as authentically as possible. Below is how Julia responded to the question about how they ended up at RMH.
Khai was born with gastroschisis. Being from Grande Prairie, I had to have him here in Edmonton at the Royal Alex Hospital. He got transferred to the Stollery shortly after he was born, and we spent around 80 days in NICU. Khai had his closure surgery at 8 days old. He was unable to drink milk for the first 70 days of his life so he was on TPN nutrition during that time. TPN isn’t the best for the liver, so in return Khai was jaundice the whole time. We got sent home April 15, 2018 and spent two months at home before getting flown back to Edmonton on June 25, 2018. He was then admitted to PICU where they found he had a blocked bile duct in his liver. During surgery they drained 800ml of fluid from his belly and found his liver was too cirrhotic to operate on. That’s when we got the news that he was in end stage liver failure and needed a transplant. Khai was only 4 kilos at the time, so we needed him to grow before that was possible. As we waited for him to grow, I was worked up to be his live liver donor. Over the next 4 months, Khai grew very little, specifically his vascular system. They decided he had a non-reconstructible vascular system due to it being too small and suggested a multi-visceral transplant instead. That night we got the call they had a match and Khai went in the next day for his transplant. Khai got 7 organs, all from the same donor. The surgery went as well as it could and took 11 hours. Khai’s recovery was amazing. He spent 6 days in PICU then was moved back to 4C. He had very few issues during his recovery, no rejection issues, and we were getting ready for discharge right before Christmas, however, he caught RSV and H1N1 at the same time. That set us back just over two months. Khai finally got discharged March 4, 2019 after 263 days in hospital! We are now required to stay in Edmonton for a minimum of one more month for clinic check ups. Khai will be on meds for the rest of his life and will always have a chance of rejecting his new organs. But as for now, he’s doing amazing!!
Julia went on to share, “Khai’s father passed away while I was pregnant, so my mom has been by our side through Khai’s journey and has been an amazing support. Kyle’s family has been an amazing support as well, however they live in Halifax so the visits have been harder to plan due to flights being so expensive. Khai and I have had both families support us fully which has brought us all so close together. I am very grateful.”
The red teddy in these pictures was made by his Nana in Halifax from one of Khai’s daddy’s shirts. The tag reads, “I once was worn by someone so dear who through loving memory will always be here…So when you hold me close to you just remember he loved you, too.”
Khai, I think your mom nailed it when she described you as precious, brave and resilient.
I think your mom is pretty resilient, too.
To learn a little more about Khai and the voluntography work I was doing in Edmonton check out Su-Ling Goh’s Health Matters spot on Global TV.