The pain and heartbreak of surgery

This four-part series follows the Luke and Zach Branson, twins from North Aurora, through their daily life dealing with the effects of cerebral palsy and the myriad, often experimental, treatments and surgeries they've undergone.

Part III

In Florida it was possible - even easy - for Kerry and Scott Branson to put their sons' surgeries in the back of their minds during August 2003.

But they feel the weight of it when they return home to North Aurora.

Restricted to wheelchairs, the twins cannot walk and are unable to communicate verbally. They are no strangers to the operating room, having undergone a handful of surgeries to aid in movement, breathing and digestion and attempt to curb frequent vomiting.

Some procedures worked; others didn't.

On a daily basis, the boys undergo many types of therapy. But the one that has shown the most advancement mentally and physically is hyperbaric oxygen therapy.

Upon their arrival home the twins have made new gains, mentally and physically, from this latest round of HBOT. A fierce appetite and desire for food by mouth has emerged. Zachary even spoke a loud and understandable word - "hi" - to a hyperbaric technician before going in for a treatment.

Doctors and Kerri and Scott credit these gains to HBOT, but it cannot help everything.

Surgery is needed to take the twins a step closer to possibly walking.

The only thing left to do is show up at the hospital, wait in a hospital room for hours and worry.

Were they making the right decision for their boys, Luke and Zachary, who have spastic cerebral palsy?

Now or never

A day after returning from having hyperbaric oxygen therapy in Florida in August 2003, the Branson family is headed to Lutheran General Hospital in Park Ridge for the twins' most extensive surgery yet.

Luke and Zach will have iliopsoas tenotomies, the lengthening of the leg tendon muscles to help straighten out their legs. It's the treatment used when splints and braces fail to correct the problem.

Since Luke's case is more advanced - his hips are about 60 percent dislocated - part of the bone will be removed as well. Metal plates, 2.5 inches wide, will be screwed into the bone to set the hips in the correction position for healing. The plates will be removed in a year after healing is complete. This procedure will realign his hips to prevent total dislocation.

It's a common surgery, according to their pediatric surgeon, Dr. Samar Jaglan. Yet getting here was a decision that took Scott and Kerri a year to make. And even as the twins are wheeled into the operating room one at a time, they are still not positive it's the right one.

All the fears and what-ifs lay before them: What if the surgery doesn't work? What if they get worse because of it?

They have waited as long as they could to make the decision, until Luke's hips are at their worst point before starting to dislocate and cause pain. It is literally now or never.

'Make my legs better'

In the orange glow of sunrise, the Bransons enter the hospital doors to register for the surgeries. Luke is scheduled for 7:30 a.m. and Zachary for 11 a.m.

The boys are given large name tag stickers, their names printed out in bold colorful letters. Luke and Zach are in good spirits, unaware of the months of healing ahead after the surgeries.

The family is directed into a private pre-op room where they will be for the rest of the morning.

Scott's parents, Marge and Jerry Branson, along with Kerri's mom, Rebecca Ersfeld, arrive to see their grandsons and to provide support for Kerri and Scott. Each greet the twins with adoring kisses and hellos.

As Luke is readied to be taken out of the prep room, Scott says in a small voice, pretending to be Luke, "Make my legs better, Dr. Jaglan."

Luke is wheeled down the hall to the operating room while Kerri and Scott escort him as far as allowed, talking to him all the way and giving him kisses before he is taken away. Luke is all smiles as he takes a ride on the stretcher down the hallway.

Kerri says she and Scott fell into each other's arms and sobbed, knowing there was no turning back at this point.

In the recovery room

Scott and Kerri are allowed into the recovery room to see each twin after they revive a bit from the anesthetic.

Each taking a side of the bed, they hold their son's hands. They give him kisses and talk to him, trying to make him snap out of his slumber.

"They're probably mad at us. And, 'What are you doing to us?'" says Scott of what he believes the boys are thinking of their situation.

Peeking under the covers, Kerri and Scott get their first look at the spica cast. It will immobilize and maintain the hips and cut bone in the correct position so the bones and tendons can heal properly. A crossbar is added to keep the legs spread apart.

The fiberglass cast has underlayers composed of a breathable liner and cottony padding. It will be on for a predicted four to six weeks and be a nemesis for Kerri and Scott to keep clean.

Zach is slow to come around, drifting in and out. Kerri strokes his hair and kisses his head, saying phrases that always make him smile and laugh. So quietly under his breath that Kerri doesn't hear as she is talking to a nurse, Zach repeats back one such phrase, "No, No, Koko" - a nickname for his little sister Leah.

Kerri explains this shows they have the ability to talk, but the parts of the brain that trigger it aren't always firing. She mentions that sometimes while inside the hyperbaric chamber the boys will say single words or short phrases that they don't while outside it. For instance, Zach has said "Yeah" and "I love you" during past treatments.

Room 239D

Room 239D will be the Bransons' home for five days, filled with pain, tears, cries, frustrations, medications and sheer exhaustion.

The first night is horrible - the children screaming out in pain throughout the night. One nurse leaves her shift in tears because she can't offer anymore than pain killers.

"It was pure hell, a nightmare for parents," says Kerri as she reflects back on it. "Looking at your kids, they're in pain and there's nothing you can do about it. All you can do is apologize and say it's going to be OK."

From the moment they awake from surgery, the boys experience spasms and fight the strange casts holding their bodies in a rigid and stretched out position. The front part of the casts have to be cut away from their chest because of breathing problems and panicking.

Through intravenous lines inserted into their tiny wrists, medications are given as long as they are in pain.

Morphine, given every hour, offers the quickest relief but sometimes makes them nauseous. The liquid stings as it enters the bloodstream and tears roll down their cheeks.

More pain relievers are given every four hours for continuous relief. The medication works quickly for Zach, but Luke is having a harder time controlling his pain.

Kerri and Scott refrain from sleep to make sure the boys are getting their medications at the proper times and attempt to make them as comfortable as possible. Kerri's mother and Scott's parents are on hand to help, also trying to fight back the tears.

"After the surgery the boys seemed pretty good, but it soon became evident that it would be a long, long night. More and more pain meds became necessary and it brought tears to your eyes to hear their mournful cries," Scott's mother, Marjorie Branson, remembers.

The children have to be turned and positioned properly every two to four hours, throughout the day and night, to prevent skin problems and provide the most comfort. To keep the edges of cast from irritating the skin, they use white duct tape Scott picked up during the surgery from a hardware store.

Diaper changes are the worst, as keeping the cast from being soiled is the one of the most challenging aspects of the cast.

Over the next few days, Kerri tries to make their hospital stay a little more tolerable by decorating the room with Scooby-Doo, Clifford the Big Red Dog and "Finding Nemo" helium balloons. Their favorite cartoons run continuously, the music and voices familiar and comforting. A few stuffed animals share their beds as Kerri and Scott sit in chairs right by their sides.

Going home

The following Tuesday, the family is heading home. Not able to slide them on, Kerri cuts shorts for the twins to wear over their casts and diaper pins them together, so they can go home clothed.

Scott sings "This old man, he played one, he played knick knack on my thumb ..." to calm an upset Luke while Kerri gets the rest of the bags ready to go home.

Figuring out how to take the twins home in their stiff casts proves a bit difficult. Outfitted with special harness seatbelts, they have to be propped up with pillows in the most reclined position possible in captain's chairs in their minivan. Zach will be in the cast for three weeks and Luke a very long nine because of his more-extensive surgery.

With the surgeries behind them, the Bransons can only look forward during the healing weeks ahead and toward the next round of hyperbaric treatments in Florida.

Maybe then, the miracle they had been waiting for six years would happen: the twins walking.