I learned earlier today from the Daily News Journal that 24-year old La Vergne resident Brandon Brewer lost his battle with Hirschprung’s disease. I wrote about him on my personal blog in 2007 and wanted to share his story to honor his brave fight. Rest in peace, Brandon. And as a community, please let us keep his mom, brother, and father in our thoughts and prayers.
"A Brave Young Man",
At Thanksgiving, most of us pause to remember the basic joys of family, a home, food on the table, and good health. For others, the basics are hard to reach no matter how far we stretch to grasp them. The stretch itself, however, is sometimes the very definition of why we’re thankful. By reaching, we have hope.
We hope that the sun will warm our shoulders tomorrow. We hope for a simple hug from someone who cares. We hope that we can finally sleep, uninterrupted just for one night. To rest. To be in our own home with the people we love. To forget for one weekend that a disease has determined our life’s journey.
Brandon is a local celebrity of sorts, but not because he’s a rock star, athlete, or inventor. He is that person whose illness has shaped his past, present, and future and it clings to him in a tenacious attempt to decide his destiny. Brandon is the young man that a community has watched grow up with the painful Hirschprung’s disease, a genetic disorder that prevents his body from absorbing nutrients.
Brandon has spent less than one hour of his life without problems. Very soon after his birth on a cold, winter day in January, Brandon began vomiting bile. A neonatology doctor immediately knew that Brandon was a very sick baby. The disease he was born with led to a small bowel transplant when Brandon was just 4-years old. He doesn’t remember the transplant, but does recall his first airplane ride on his own Lear jet. His family and friends, along with the news media, were there to see him off but when he boarded the plane and realized it was only his Mom and Dad coming with him, he was terribly upset. But once the plane reached the clouds, he asked his Mom, “Where’s Jesus? We’re up in the cloud, Mom. Where’s God?” His Mom laughs at how she froze at Brandon’s question because she never anticipated it.
However, Brandon has always been ahead of his age. As a young child, he seemed like a little man in a tiny body because he talked about his medical procedures using the correct terminology.
When they reached the hospital for transplant that June, Brandon was quiet until they took him from his mother’s arms to go into surgery. His cries were devastating to his mother because she was helpless and could do nothing to calm him. After surgery, Brandon was sedated for several days to allow some time for recovery. The small bowel transplant seemed to work for several months, but in September his body began rejecting the new organ. Brandon was hospitalized and in such unbearable pain that he would repeatedly hit his head on the metal sides of the hospital bed. The hospital staff told his surgeon about the nonstop screaming, but every time the doctor made rounds Brandon was asleep from exhaustion.
On the third day of rejection, Brandon was awake when the surgeon came in. Finally witnessing the terrible pain, the surgeon ordered narcotics for Brandon. Narcotics were not given to transplant patients 10 years ago because of its effects on the transplant itself. It took two doses of the medication to ease Brandon’s pain and he became calm enough for an x-ray to be made. While in x-ray, Brandon’s Mom felt something was wrong. His eyes were fixated and he barely lifted is head. When the x-rays were complete, his Mom rolled the gurney back to his room herself to find help. In the room, Brandon stopped breathing, turned gray, and died. A nurse called a code-blue and all the patient rooms went into fire-alarm code – or lock down – to prevent other families from looking in. Quickly, the doctor ordered a narcotic reversal and Brandon came back.
Meanwhile, Brandon’s Mom was crying and praying to God that Brandon be spared. Aloud, she told Brandon that she knew his body was tired and worn out, so it was okay if needed to go. She assured Brandon it was okay to fly, but begged God to let him live. He regained consciousness, but the hospital staff was very worried that because of the loss of oxygen to his brain, Brandon would never be the same. During this difficult time, Brandon’s mother was grateful that her friend Kathy was at the family’s side. Her presence provided powerful moral support for she had lost her 2-year old daughter while waiting for a liver-bowel transplant. Kathy had worked through her grief to the point where she could visit Brandon at the hospital – right across the hall from the room where she faced the greatest loss in her life when her own Mandi died.
Two weeks passed and Brandon did recover. He asked his Mom if he could just go home. He was in transplant rejection and needed to spend some time in the comfort of his own home. The doctors gave permission for a weekend trip and again family, friends, and the media were there to greet them when they returned. When Brandon returned to the hospital on Monday, a miracle had occurred. All signs of rejection disappeared.
Today, Brandon is thankful that he’s still breathing. He’s grateful he no longer has to take steroids because they made him swell like a puffer fish – at times to 60 pounds over his regular weight. He remembers meeting Charlie Daniels at a Tennessee Titans game where fans were given the opportunity to complete organ donor cards. Brandon also enjoyed the limousine ride he had a few months ago to take him to a fundraiser. He really enjoyed swimming in the ocean several years ago – a swim that lasted for two hours with none of his “lines” falling out or clogging.
Brandon also thinks about his future and his desire to pilot an F-15 fighter plane. But for someone about to turn 16-years old, his more immediate plans are to open a big bag of Skittles and relish every bite.