LAKEWOOD RANCH — Greenbrook mother Wendy Jaworski opens her journal to the first page. It reads, “The Day That Changes Our Lives Forever.”
And even though she started keeping the journal about five months ago, it’s more than half-full. After all, writing was the only activity she could stomach since she and her husband, Michael, found their 10-year-old daughter, Rachael, collapsed the day after Christmas.
Paramedics rushed Rachael to Lakewood Ranch Medical Center and later airlifted her to All Children’s Hospital in St. Petersburg. Doctors determined she had collapsed after an arterio-venous malformation in her brain ruptured. But later scans also revealed two brain aneurysms, which if left untreated, could kill her.
“It’s therapy,” Wendy says of the journal. “And someday down the road, she’ll want to look at it.”
So far, attempts to repair the aneurysms have been unsuccessful, and the Jaworskis now are considering Gamma Knife surgery — a procedure that involves using high-dose radiation. It’s a high-risk, slow-reacting procedure for which Wendy harbors many reservations.
But as of now, the Jaworskis may have no other choice.
THE WORST DAY OF THEIR LIVES
Wendy was asleep when she heard her husband’s cry from the bathroom. It was 10:15 a.m., Dec. 26, 2009.
Call 911! he shouted after finding Rachael on the floor.
While waiting for paramedics, Wendy, a nurse of 27 years, went on autopilot. She knelt over her daughter and lifted up one eyelid. Then the other.
And that’s when she knew something was seriously wrong.
“One pupil was large, and the other was small,” she remembers. “That’s when I got hysterical.”
An ambulance rushed Rachael to Lakewood Ranch Medical Center, where doctors performed a CAT Scan and then transferred her to All Children’s via Bayflite. The Jaworskis followed in their car, over the Sunshine Skyway. They made the 45-minute drive in about 25, and as they entered the ER, a neurosurgeon was waiting for them. He used words such as “external shunt,” “craniotomy” and “cerebral angiogram” to describe his plan for Rachael.
The Jaworskis found the hospital’s chapel while waiting for more news. There, Wendy sat, trying to wrap her mind around what was happening.
“There were no headaches, no dizziness,” she says. “We just had no idea what was going on.”
DARKNESS, THEN LIGHT
Rachael’s ruptured AVM had caused her intracranial pressure, which normally would be about 10 mm Hg, to spike to about 40. To prevent any further damage, doctors put her in a medically induced coma for four weeks.
During that time, the Jaworskis had no idea the extent of damage — if any — that had occurred. Both Wendy and Michael stayed by their daughter’s side, watching for every little movement. They took turns attempting to sleep in two chairs pushed together.
“Life in the Pediatric Intensive Care Unit is an hour-by-hour, day-by-day event,” Michael wrote in his online journal Jan. 5. “In normal day-to-day life, one doesn’t readily notice God’s blessings. But when you are sitting bedside with a sick child praying for her to recover, those blessings become clearly evident with every cough and twitch of an eyelid.”
Fifteen days later, those blessings shined through with the first signs of Rachael’s return.
“We asked Rachael to open her eyes. ‘Rachael, this is Daddy, open your eyes!’ She disappointingly didn’t open them. Then, Rachael slowly started moving her left hand toward her head. ... Rachael raised her hand above her feeding tube, took her thumb and forefinger and tried to pull her own eyelids open.
“The joy and excitement in the room couldn’t be contained,” Michael said. “I was cheering, Wendy was crying tears of joy, and the nurses that where watching from the doorway couldn’t believe what they just witnessed …”
In the weeks that followed, the Jaworskis learned the damage the AVM had caused. Rachael currently has no short-term memory. She has intense pain in her left foot and has lost her fine motor skills and vision in one eye.
In addition, doctors still need a plan to stabilize the two aneurysms still in Rachael’s brain.
After two months at All Children’s, Rachael transferred to Tampa General Hospital, where she began occupational and speech therapy. She made some progress but not as much as doctors would have liked. Because Wendy is a nurse, the family decided Rachael may make better strides at home. On April 5, Rachael returned to her home, which sat exactly how she left it. The Christmas tree was still up — with all her presents underneath.
The Jaworskis worked to turn their home into a therapy center for Rachael. They use the pool for hydrotherapy sessions, go on many walks around Greenbrook Adventure Park and even visit a nearby pet store for pet therapy.
Last week, Rachael returned to Tampa General, where doctors attempted unsuccessfully to seal the two aneurysms.
“When the doctor sat us down (after the surgery), I could tell from his face that it didn’t work,” Wendy says. “That (April 20) was the second worst day of my life.”
Because of the two aneurysms, Wendy and Michael work in shifts to provide around-the-clock care. Wendy sleeps in Rachael’s room, ready to spring into action should she exhibit any signs of a rupture. Rachael’s brother, Ryan, also helps with his sister’s care, taking her on walks and providing anything his family needs.
The Jaworskis say they are grateful for the outpouring of support they have received. McNeal Elementary, where Rachael is a fifth-grader, has organized several fundraisers to assist the family. A Braden River Soccer Club team also created a poster that reads, “We Play for Rachael.” And most recently, Keller Williams Realty’s Mary Mastro organized a car wash through the Give Where You Live Campaign.
In two weeks, the Jaworskis will meet with doctors to discuss Gamma Knife options.
“We don’t have any choice,” Wendy says. “We can never let her out of our sight. She can’t have a normal childhood (like this).”
But still, the Jaworskis remain optimistic.
“We’re keeping the faith,” Wendy says. “She’s alive; she’s Our Little Miracle.”
Contact Michael Eng at firstname.lastname@example.org.
HOW TO HELP
Anyone interested in helping the Jaworski family can do so through Michael Jaworski’s Caring Bridge journal at www.caringbridge.org/visit/rachaeljaworski.
Arterio-venous malformation: An AVM is a defect of the circulatory system comprised of tangles of arteries and veins. In rare occasions, AVMs can rupture. This is what caused Rachael to collapse.
Brain aneurysm: A cerebrovascular disorder in which weakness in the wall of a cerebral artery or vein causes the blood vessel to balloon into a sac-like area. If an aneurysm ruptures, it could cause stroke or death.