May 6, 2007

Positivity: Baby Bo, What a Miracle He Is

Filed under: Positivity — Tom @ 6:59 am

From Urbana, IL:

Sunday April 29, 2007

It’s a chilly April afternoon, and 13-month-old Bo Porter and his mom are curled up on their living room floor, looking at a picture book in their Urbana home.

Bo reaches up to tug something loose near his neck, and Katey Porter quickly reattaches it.

“It’s his favorite toy,” she says of the suction piece to the long, skinny tubing that connects her tiny son to the portable ventilator that is always at his side, keeping him breathing.

Unable to breathe well enough on his own, Bo has been on ventilator support since his birth, making him a lot more complicated to care for than the average baby.

Not that Katey and husband Rob are complaining.

They’re just happy to have him home.

Born prematurely March 10, 2006, Bo spent his first nine months hospitalized in Peoria and had 14 surgeries before his first birthday.

And his medical ordeal still isn’t over.

Bo was born with an abdominal defect known as an omphalocele (pronounced um-phal-o-seal) in which many of his internal organs, including his stomach, liver, intestines and spleen, were outside his body at birth.

The severity of omphaloceles can vary, with the smaller ones the least complicated to fix. But Bo was born with a giant omphalocele, the worst kind to have, Katey said.

A speech language pathologist for Carle Therapy Services, Katey said she learned about Bo’s birth defect early in her pregnancy, when she had her first ultrasound.

Katey went into premature labor at 29 weeks. Bo was born two weeks later, with his chance of survival measured hour by hour in the beginning.

During Bo’s long months in the hospital, Katey and Rob stayed at a hotel to be near Bo. They later took turns at their son’s bedside and commuting to work back home.

Doctors have sealed up the opening across Bo’s abdomen, leaving him for now with a protruding belly. More procedures will follow over time to push the organs back farther into his body, Katey said.

Because of the fragile state of Bo’s lungs, she said, they’ve had to proceed slowly. But Bo’s prognosis is good. Doctors expect him to be able to breathe on his own, and to walk, and to be able to learn as well as any kid when he gets to school.

“He will be able to do most things that any other kid can do, but he probably will always have a little bit of a bulge on his belly, so he’ll have to be a little careful,” Katey said. “So he probably won’t play football.”

These days, nurses supplied by the state are in the Porter home day and night, 16 hours out of every 24, helping the parents keep watch over Bo, who can never be left alone.

“Somebody has to be awake, looking at him 24 hours a day,” Katey said.

The Porter home has two identically decorated yellow and green baby nurseries. One is a smaller bedroom that originally was intended for Bo and now holds a lot of his medical equipment and supplies.

The other, his current nursery, is the former master bedroom that his parents vacated when the smaller bedroom wasn’t large enough for Bo and his equipment and a desk for the nurses.

Bo is already developing, in some ways, like a typical baby, Katey said. He eats baby food. He plays with baby toys and is especially fond of books, and he can sit upright and roll from side to side – though his distended abdomen has kept him from crawling or walking.

Because of the ventilator, Bo is unable to make sounds, though the Porters say they know when he’s crying by the look on his face and the tears in his eyes.

Both parents also suspect, though they haven’t determined yet with testing, that their son can’t hear because he doesn’t respond to the sound of his name.

Bo already is undergoing a variety of therapies, which eventually will include speech therapy, when the Porters are able to wean him off his ventilator – something they hope to do over the next couple of years.

“He can breathe a little bit on his own,” Katey said. “But we’re not sure how long he’ll last without it.”

Meanwhile, life is about to get even busier for the Porters: They are expecting another baby, a daughter, in July.

Katey said she was afraid when she first discovered she was pregnant again, after what happened with Bo. But ultrasounds haven’t turned up any problems so far.

“You think, ‘I can’t do this again. I’m so scared,’ ” she said. “But Bo is a blessing. He has taught us so much.”

Because of Bo, the Porters said they truly learned the power of faith and prayer. Of believing God is in control, and knowing he has a plan for their son.

“It’s made us better people,” Rob said.

After losing what was a full-time job in construction sales while Bo was hospitalized, Rob is now a part-time salesman and part-time stay-at-home dad with a flair for making his son smile. He demonstrates by making silly faces from across the room, and Bo flashes him a heart-stealer of a baby grin.

The expenses related to Bo’s care are mounting, though the Porters say Katey’s insurance has picked up all but about $50,000 of the medical bills that had totaled some $1.8 million as of November. The family is getting some help from public aid, which pays for the in-home nurses and medical equipment.

A fundraiser set for May 5 at Holy Cross Catholic Church in Champaign is intended to help the Porters cover other ongoing expenses, such as gasoline for the trips back and forth to Peoria and the high monthly power bills from keeping a ventilator and lights on in the house 24 hours a day, said Cindy Howie, a Holy Cross parishioner and one of the fundraiser organizers.

Katey said she has an extra-large stroller that can accommodate Bo’s ventilator, and she hopes to bring him along for at least the early hours of the fundraiser.

She also hopes, as Bo grows older, that he continues to inspire faith in others.

Already, Bo’s story – shared on a Web site the Porters established to keep family and friends updated about his progress – has inspired people they’ve never met to write and share prayers.

“I hope that he will be a witness to God, and that God does great things that we just can’t make sense of, that we just don’t understand,” Katey said. “I think Bo is going to be an example of that, and I hope that he tells the world what a miracle he is.”

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