Head vs. heart
Fifteen years ago, Jodi Dixon thought she had a pretty good life.
The Alexandria native was happily married and living in Georgia with her husband, Neal. She was excelling in her career as clerk of courts.
Then God gave her a gift that would bring her the greatest joys and the greatest sorrows that she would ever know.
That gift was her son, Devin.
A BABY BOY Devin was born February 16, 2000 after what Jodi describes as a “perfect, full-term pregnancy.”
While he appeared to be a healthy baby, he certainly didn’t seem happy.
“He was miserable,” Jodi recalled of those early days, weeks and months. “He cried all the time, he didn’t want to eat, he wouldn’t sleep.”
After visits with several pediatricians, who assured the Dixons that there was nothing wrong with their son, Jodi convinced her husband to move to Alexandria where she could get help from her parents.
Shortly after the move, 4-month-old Devin ran a temperature of 103.5. A visit to a local pediatrician finally started the family down the path to finding answers.
A DIAGNOSIS It was discovered that Devin suffered a stroke before he was born, caused by a blood clot lodged in the base of his brain. The stroke caused bilateral brain damage.
The baby was diagnosed with Factor V Leiden, an inherited disorder that increases the chance of developing abnormal blood clots, usually in the veins.
Additional testing showed that Neal also had the mutation, although he had been unaware of it.Numerous medical appointments followed.
Devin’s blood pressure was found to be in stroke range due to narrowing of the arteries in his right kidney (renal artery stenosis). He also suffered from a difficult to control seizure disorder and gastroesophageal reflux disease. “There were lots of long hospital stays, but before his first birthday we had a lot of it figured out,” Jodi said.
A NEW WAY OF LIFE The Dixons had to learn to care for their son in a much different way.
He had to be kept hydrated to prevent blood clots. It took patience to feed him, often taking 24 hours for him to finish one bottle of formula.
“It was a constant struggle,” his mother said. “For the first three years I lived in the recliner rocking him. He was fussy about who held him and car seats would send him into a full-blown, hyperventilating, screaming fit, so we didn’t go far.”
He had a gastrostomy tube inserted into his stomach for feeding just before his first birthday. That was later switched to a gastrojejunostomy tube that accessed both the stomach and small intestine.
Devin never learned to walk, talk or do the many other things children do as they grow.
“I just wanted the best for my son,” Jodi said wistfully. “He looked so normal, so beautiful. But when his milestones were not being met, it was so hard.”
A FAMILY’S CENTER Once the family adjusted to Devin’s needs, they settled into as normal of a life as they could.
Devin went to school for kindergarten and 1st grade, but was kept home after that due to his low resistance to clostridium difficile (C. diff), a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon.
He suffered from bouts of pneumonia and respiratory syncytial virus (RSV) and had double hip surgery at age 6.
“He was very good about manipulating his environment,” Jodi said with a laugh, explaining that he didn’t like his physical therapy treatments and would turn uncooperative. “If he didn’t want to do something, no one was going to make him do it.”
Devin was also very clear about what he did like.
“He likes movies and TV shows and is very particular about what he watches,” Jodi explained. “He is also a grammy’s boy. But when it comes to sports and ‘guy things’ it’s all about Daddy!”
Neal’s children from his first marriage came to live with the family when Devin was 2. Ashley is now 22 and Trey is 24. “Here we all were in this little house,” Jodi said. “There was a lot of turmoil, but also a lot of love and good times. Devin was always the center of the family.”
That family also included Devin’s personal care attendant, Maria.
“Maria is Devin’s best friend,” Jodi said. “They go to the beach and parks. And she keeps me sane. Without her, some days I wouldn’t have even gotten out of bed.”
CHALLENGING TIMES Devin’s condition strained the family’s finances, but the money wasn’t what mattered to the Dixons. Instead, they focused on giving Devin the best quality of life possible.
His health took a turn for the worse in 2012 when he suffered more serious bouts of C. diff and pneumonia.
In September, he spiked a high fever and became unresponsive. He was airlifted to St. Paul Children’s Hospital.
He experienced a severe gut infection and his organs were failing. He underwent surgery, had several blood transfusions and suffered an abscess in his stomach.
He returned home in November. In February 2013, he was taken to Minneapolis Children’s Hospital with pneumonia.
“It should have been a five-day stay,” Jodi explained. Those five days turned into eight months.
“It was just one thing after another,” she said. “He had fluid outside his lungs, and his tissue was leaking fluid. He was dehydrated, yet he was swelled up with fluid.
“He had many infections, pancreatitis and is now a severe Type 1 diabetic.”
HEAD VS. HEART The Dixons were recently told that nothing else could be done for their son, and they were encouraged to bring him home to die.
“For so many years I had this irrational fear that I’d die first and leave Devin,” Jodi said through her tears. “It was debilitating. But it never occurred to me that he’d die before me. That was a real slap in the face.
“I’ve been so full of anger and grief so many times. I’ve mourned loss after loss after loss when we could have enjoyed so many things.”
Jodi reached out to two other doctors for their opinions and was given hope that Devin could live a couple more years.
“There were no promises,” she said. “I know Devin is very sick, and anything can get him at this point, but there’s still hope.
“The line between selfishness and compassion is so blurred,” she added. “All the way along we’ve been asked if we are sure we want to proceed with treatment and where our line is.
“I’m firm on where the line is, and then when we get to it, I change it. My head and my heart just can’t agree.
“I am hoping with everything I have that Devin will let me know when it’s time.”