Greg's scalp is sewn together with 62 stitches. JEFF JANOWSKI/STAFF

Saving Greg: The recovery

Web posted November 14, 1999

 The surgery
 Additional surgery needed
 Recovery
 Progress fades
 After the surgery
 View the picture story

Story by Tom Corwin
Photographs by Jeff Janowski

Aug. 21

Greg lies back in the bed at the epilepsy monitoring unit. The angry red scar on his head looks like a zipper. He gives a lopsided smile, only the right side of his face pulling up.

Three days after surgery, his mom and dad are trying to keep the mood light. ``He's got 62 stitches in his head,'' Lynne says proudly.

``It's not as bad-looking a wound as I thought it was going to be,'' Dennis says.

Greg seems to struggle to sit up, then gives up.

``He's still a little weak in his hands, but he's getting better,'' Lynne says. ``When they first brought him up to the PICU (pediatric intensive care unit), he couldn't move at all.''

Dennis looks admiringly at his boy, who still has some short, blond stubble. He is getting a matching haircut.

``I've got my appointment in the morning,'' he says ruefully, running his hand through his thick, blond hair.

``Daddy's not going to look as good as Greg,'' Lynne says to her son.

A thin ``rattail'' of blond hair peeks out from the back of Greg's head.

``But that's got to go,'' Lynne says, laughing.

In a whispery voice, Greg says he is doing ``fine.''

The seizures are still occurring.

``He's had three already today,'' Lynne says, trying not to sound grim. The doctors have hooked Greg back up to an electrode to see what is going on, but they find no cause for concern.

In the midst of one seizure, though, Greg just seemed to freeze.

``He was staring straight ahead,'' Lynne says. ``He's never done that before.''

Both parents are quiet for a moment.

``We're not giving up hope,'' Lynne says. ``We weren't expecting a miracle, but still, he seems better.''

Aug. 24

A few days later, Lynne hurriedly gathers the linens off the couch where she has been sleeping and clears away the plate of chicken fingers Greg had for lunch. Greg goes to the couch, where there's now a small stuffed dog, named Peanut after his dachshund back home.

``He wanted us to bring the dog to the hospital with us,'' Lynne says, smiling as Greg curls up on the couch clutching the dog.

``He's just worn out this morning,'' she says. She looks away hollow-eyed.

``I don't sleep at home,'' she says, waving her hand as if it were nothing. ``I'm so used to him having seizures and getting up. I've gotten so used to it, it doesn't bother me anymore.''

The seizures still come. But they are light, and they come when he sleeps, Lynne says. The circles under her eyes look deeper as she looks at Greg, asleep.

Aug. 25

A week after surgery, Greg is ready to go home. He is upstairs in a bigger, brighter room, asleep on a long couch clutching a big, black-and-white stuffed dog named Spot. Lynne is on the phone setting up his follow-up appointment.

``Is that on the second floor?'' she asks, then nearly drops the phone as she catches something out of the corner of her eye. Greg's right arm and right leg are sticking straight out. ``Just a minute,'' she says quickly. She drops the phone and rushes over to crouch beside Greg, as if she expects him to roll off. The arms and legs drop as she cradles him, but he can barely keep his eyes open. ``Greg, wake up,'' she says, straining to sound calm.

A few minutes later, Dr. Park walks in. He doesn't seem surprised by the seizures, which now appear to have crossed over to the other side of Greg's brain.

``Sometimes (after surgery) you could observe that phenomenon, a kindling phenomenon -- the focus has kindled to the other side,'' Dr. Park says. In cases where in the past the seizure has quickly spread across both hemispheres of the brain, as in Greg's case, the tissue on the side opposite the one from where the tissue was removed is still expecting the signals to come, and it may be triggering them on its own, as kindling sparks a fire.

``It's too early to say what will happen,'' Dr. Park says. The hope is that it will fade away in a few months.

Dr. Park sits in a chair and beckons Greg into his lap, beaming down at the boy as if he were his own. Then he poses for a picture. Greg gives him the lopsided smile.

``Give him a hug for making you better,'' Lynne says, and Greg gives Dr. Park a clumsy hug around the neck, his arms flopping.

The bags are packed on the bed, next to the stuffed animals, some Cherry Coke and the dried remains of some yellow roses his teacher Mrs. Greene and his class sent. The flowers spill a trail of petals across the floor. As if in slow motion, Greg steps forward, carefully bends and picks up each petal. He brings them one by one to the trash can and drops them in.

Sept. 10

The hair has grown a little over the scar, which is a duller red three weeks later as Greg sits in the waiting room of the pediatric neurology area. His eyes are brighter as he flips through a magazine, pausing at a few pictures and then jumping down to get another. He picks up his yellow SureShot camera and squints through the viewfinder, turning it up one way, then another, scuttling out of his chair and flopping down into another one, dragging his left leg slightly.

His father watches quietly from another chair, a small smile on his face. It is a smile of slight surprise, pleasant surprise. After years of watching the torment of the seizures, he is now watching his boy emerge from the fog.

``It's been so long since he's been having them, we really don't know what normal is for him,'' Dennis says. ``I think he will be quiet and shy.''

The seizures still come in his sleep, a couple of times a week, but none while he is awake. Dr. Park tells Dennis to start cutting back on Greg's medicine.

``He's doing much better,'' Dr. Park says, reaching over to affectionately rub Greg's head, then stopping midstroke to lean over and inspect the scar.

Sept. 25

Greg's teacher, Mrs. Green, notices his increased alertness and attention a month later when he returns to school. In her special education class, there is a half-circle of desks with six pupils, but each is going at a different pace, sometimes learning how to round up or round down numbers together, spelling out words together, or working at their desks on worksheets.

Greg hardly speaks as the other children gather around a small table where Mrs. Green points out words and letters on an easel.

``What sound does this make?'' she asks, pointing to the letter S.

``SSSSSSS,'' the kids hiss in unison. Greg's lips move, but hardly a sound escapes.

She points to the ``m'' in ``lamp.''

``Greg, whose name begins with m?''

``Mack,'' he mumbles.

``Who's Mack?''

``My brother.''

``Good job.''

Greg tries to copy down the letters as she goes through them but struggles with a ``t.'' He looks up from the table at her.

``You'll remember,'' Mrs. Green says, her voice soothing. ``You'll get back into it.''

At his desk, he labors as he copies the sentences, forming each letter with separate, deliberate strokes, sometimes stopping in midword to reassess. It takes him a minute and a half to copy ``the boy walks slow.''

But Mrs. Green smiles down at him.

``Greg, your handwriting is so much better,'' she says. Greg reaches up and scratches his scar.

He sits on the floor with Mrs. Green, going through 2 plus 2, 3 plus 1, reciting one through nine quickly and distinctly.

``Greg, you are doing this so much faster than you used to,'' she says proudly. A big yawn escapes him.

A couple of hours of schooling is all Greg can handle. As his dad and little brother come to the office to pick him up, Greg sees little Bennie Mack and immediately bends over to look him in the eye, the two grinning like pirates.

``Eat! Eat, Eat!'' they chant out the van window.

At McDonald's, Greg pokes through his Chicken McNuggets and fries before he and Bennie Mack charge out into the playground. As Greg struggles to remove his shoes, Mack has already barreled up the ladder and disappeared into the tube slide.

``He's not afraid of anything,'' Dennis says, laughing, as Mack comes shooting out of the slide. Greg slowly clambers up the slide and several minutes later comes shooting out, a big grin on his face.

In the ball pit, Greg and Mack throw balls at the surrounding screen, at each other, and then at Dad, who's on the other side of the screen. When it is time to go, it takes several minutes to extricate them.

As Dennis ties his shoes, Greg watches Mack sneak over to the entrance to the slide. He climbs a couple of steps, looks back, then chickens out. Greg grins, still a little lopsided.

The Wests live near a state park, on a sandy spread ringed by pine trees. The two boys fight over who gets to go get the mail. Peanut gives chase before Greg finds a yellow-and-green ray gun and shoots her.

``SST-SST-SST-SST,'' he hisses. ``BOOM!''

Peanut, unfazed, jumps up on his leg.

The wooden fort in the back yard is quickly scaled by Mack, while Greg stays closer to the ground on a rope swing. Climbing is verboten, Dennis says. He and Lynne are trying to return to a normal routine. She has given up sleeping in the bunk bed below Greg.

Almost.

``She starts off in our bed but gets up in the middle of the night and goes to him,'' Dennis says.

Lynne has gone back to work as a substitute teacher in Greg's school. ``She feels better being up there.''

The boys have moved onto the swings, where Mack is swinging higher and higher.

Peanut has wandered off, and Mack goes to find her. Greg starts meowing, and his dad looks at him with a puzzled smile.

``Peanut's a cat,'' Greg says, with Mack's grin.

``Why are you calling him a cat?'' Dennis says, laughing.

``Because he eats cat food,'' Greg says.

Mack returns with a plastic baseball bat and ball. Dad tosses him a fat pitch, and Mack swings his whole body around and bops a blistering liner. Then another hard shot, chasing down the ball himself and running back. Greg picks up the bat and swings an awkward, looping swing. Dennis runs over and stands behind him, guiding the bat in Greg's hands and leveling out his swing.

``Swing like that,'' he says. ``Swing like you used to.''

Dennis backs up about 20 feet and a fat pitch sails toward Greg, whose bat lurches around the ball. Mack shags the ball and tosses it back in. Another fat pitch, a little high up on the chest, and Greg's bat flies underneath it. Mack tosses the ball back. Dennis looks hopefully at Greg and tosses another. The ball floats like a balloon over the hot sandy dirt toward Greg, with his forehead sweaty and eyes squinting. His left elbow flies out and the bat tugs along behind it, sweeping forward and just under the ball.

Dennis looks at Greg again, moves a couple steps forward and tosses another one. The bat flies out and pops the ball up -- a lazy fly ball that Dad catches easily in his hands.

But everyone cheers.