Bryson’s Journey- From Dad’s Perspective Part 4

UF Health Shand’s Children’s Hospital, so in April of 2021 we made an appointment to go meet their team and see if they would be a good fit. What I was not expecting was the compassion and the feeling as if you were family from the minute you walked in the front doors. The doctors took the time and sat down and explained everything. They asked if we had questions and made sure that we had all the information we needed to feel good about being in their care and to this day it is the same level of care and compassion. So, May 2021 was a big one for us. We came into the hospital hoping for a week, but it turned into 37 days. During the heart catheterization they found that Bryson not only had hypertrophic cardiomyopathy, but he also had restrictive cardiomyopathy which is rare and has no cure or treatment plan, only a heart transplant. So, they listed him 1A status on the heart transplant list and Ashly and Bryson had to stay in the hospital and I had to come home and go back to work. This had to be the hardest thing I have ever had to do to leave my son and wife in a hospital and travel home for work and not be able to see them for two weeks to a month. So, I traveled every two weeks from our home in Lee County to Gainesville staying in a hotel while there due to COVID restrictions. During my time at home when I was not working for my primary job, I was doing everything I could to make as much money as possible. During this time Ashly took a leave of absence so she could live with bryson in the hospital and was not recieveing a paycheck. However, Bryson was doing well and was having issues being a 2-year-old confined to the walls of the hospital so for quality of life Ashly and I decided to bring him home for as long as we could and change his transplant listing status to 1B. During his time at home he got sick a few times causing damage to his heart but nothing that the transplant team thought he needed to be hospitalized again for. But then our family got COVID-19 and that was the last straw that we had left to hold. So, after covid we did some checkups in town and decided we could not stay home anymore in fear we would lose our son…….. to be continued

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