- April 19, 2024
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Ask Ashley Higgins what she was doing after work on Wednesday, Feb. 3 and she has no problem remembering. That was the afternoon she came home from work to find her 11-year-old son Cameron sprawled on the kitchen floor fighting for his life due to an undetected arteriovenous malformation (AVM) in his brain.
Higgins works in the administration offices at Grand Haven and had gotten off early that day.
“The biggest thing about Cameron is he’s a polite young man . He’s well-liked and missed by the students. We miss him terribly.” BELLE TERRE TEACHERS Brooke Paci and Ana Fajardo
“After he got off the bus he was selling his camp cards for Palm Coast Boy Scout Troop 281,” Higgins said. “He was fine. He told his friend he needed to get inside because he knows I don’t let him go outside when I am not there.”
Initially Higgins thought Cameron was playing a joke. He was on the floor, a water bottle by his side, his hand stretched out like he was trying to get it. His mom said he likes to play tricks and make people laugh so at first she thought -- she hoped -- this was just another joke.
“When I walked in, he looked up at me and then his head went down,” she said. “I screamed, ‘I’m going to call 9-1-1. You’d better wake up.”
While waiting for the ambulance, Higgins rolled him on his side because it seemed he was going to be sick. She found out later that he was actually having mini-seizures. He had never had seizures before. His only medical issue was an occasional bloody nose from time to time, something that would have more significance in future days.
Cameron was taken to Florida Hospital Flagler where they gave him medication to stop the seizures, but the seizures didn’t stop.
“The story I like best to tell about Cameron is when he got a 100 percent on a math test. I told him he should be proud and tell his friends. But he said, ‘I don’t want to make anyone feel bad.’ He has a big heart and is very humble.”
CAMERON’S DAD Kyle Higgins.
“Then they took him back for a CAT scan and found blood on his brain,” Higgins said. “They came out and told us he needed to be put on a breathing machine and that he was going to have to be life-flighted to a hospital that was capable of caring for him.”
“Dr. (Robert) Livingston was his doctor and he told me Cameron was going to have to have brain surgery,” Higgins said. “As a mother, I felt like my insides were dying; I really did.”
The next thing Higgins remembers is climbing aboard a medical transport helicopter for the trip to Wolfson Children’s Hospital in Jacksonville. It was a little before 2 a.m. Dr. Livingston told her that Wolfson’s had the specialized neurological care Cameron needed.
Cameron was taken into surgery to have an EVD (External Ventricular Drain) placed in his brain to relieve the pressure. It was the pressure of the blood on the brain that caused the seizures, and two mini-strokes. His AVM was rated a class four out of five. The next day the pressure returned and a second surgery was performed to put another EVD drain on the right side.
“He was a class 4 because it’s (AVM) is very deep in his brain and it’s in the middle,” Higgins said. “The majority is in the left part, but there’s some on the right.”
In just over two weeks, Higgins has become quite versed on AVM, treatment, and medications. She talks about tangled blood vessels in the brain, aneurysms, angiograms, and intracranial pressure with the medical staff.
“The nurses are great, but they are so busy,” Higgins said. “Something, like the EVD drains have to be level with his tragus (pointed eminence of the external ear, situated in front of the concha, and projecting backward over the meatus) is important. The drain could work as a syphon if it’s too low, and if it’s too high he won’t be able to push the pressure out.”
She sleeps in his room on a love seat-sized couch that folds flat. A green moleskin journal contains everything that happens each day, every medication and dosage and what it’s for, and every person who comes in to see Cameron.
“I have done lots of research since this started,” Higgins said. “The first two weeks I was researching until 1 in the morning every single night.”
In the back section of the journal is a letter for Cameron to read when he is better.
“I haven’t been able to talk to him, and in the beginning I felt he wasn’t hearing me so I wanted to write down all my thoughts, and tell him that I am thankful for him, and this is what happened to you and whenever you wake up you will be able to read it,” she said.
“Every day is a little bit better, but the problem”…she retracts that…”not a problem, I am thankful, but every step is so small, but when he does something, everyone is like “Halleluiah. The little microscopic advances were enough to keep me going. I’m thankful for every breath he takes, every time he looks and me; and every time he squeezes my hand it’s a blessing.”
On Monday, Feb. 22, his mom, Grandmother Tana Fraser, and the nurses were getting Cameron ready for a big move. He was being released from Pediatric Intensive Care Unit and moved to room 508 on the fifth floor neurological unit at the hospital.
Cameron will need rehabilitation; he will need to relearn everything, from walking to reading, colors and math. Higgins is hoping to be able to move him to Brooks Rehabilitation, south of Wolfson Children’s Hospital. But, like everything up to this point, with no insurance, a charitable application has to be completed and accepted.
“We’ve applied for Medicaid so hopefully we will get approval for that,” she said. “Going forward is where we are going to need the help -- getting into Brooks Rehab, and the medication is expensive.”
Higgins seems uncomfortable asking for help, and overwhelmed by the kindness and compassion she has received from friends and strangers. She has no insurance, she had to drop Florida Healthy Kids for Cameron because as a single mom she couldn’t afford it.
“I’m no stranger to hard work,” she said. “I work every day, and was in school online full time for IT. I work hard, and it’s not about wanting a handout for sure.”
She is amazed at the response she has gotten from the Gofundme page she set up.
“Every time a donation came in I would cry,” she said. “People I don’t even know were donating $500, $300...the generosity of human kind is ‘wow.’”
She knows she is lucky to have family support. Her ex-husband Kyle drove from Orlando to Jacksonville every day the first two weeks until Cameron was awake. Her mother who lives in Georgia, was able to arrange to work remotely from Palm Coast. Her father and step mother, and her brother Chris, who she lives with, are all in Palm Coast. She is also thankful for her employer.
“The Grand Haven administration has been wonderful,” she said. “My boss is really one of a kind, and the residents and board have supported me, and are very compassionate.”
Once Cameron is through rehabilitation, tests will be done to determine the next step.
“If they can do a craniotomy, go in through the top of the skull, and remove it (the AVM), then there you go, it’s fixed,” Higgins said. “In his case, they’re probably not going to be able to remove it all because it’s on both sides and the right side is very deep. If we don’t get the surgery the rest of his life will be CT scans and MRIs every year.”
As much as Higgins wants him to get better, she wants to get the word out about AVM and aneurysms.
“If your child has headaches or nose bleeds, don’t think of it as ‘oh they’re just a kid,’ ” she said. “Cameron had nosebleeds. I’m not aware of any headaches, but he’s not the kind of kid who would complain. He would fall on the skate park and never cry or complain, he would just get up and run it off.”
This incredibly strong and resolute woman waivers, for but a moment, her eyes fill with tears, her words catch in her throat,
“I tell him at night, ‘come back to me.’”
