http://www.buffalonews.com/cityregion/story/86345.html?imw=Y
It’s a miracle that Mikey Kasprzyk is home now.It’s an even bigger one that he and his mother, Michelle Kasprzyk, are alive at all.
Both mother and child nearly died during delivery when Kasprzyk suffered an extremely rare and almost always fatal complication called amniotic fluid embolism during what was supposed to be a routine, induced labor Feb. 18.
After three months of recuperating in neonatal intensive care and an operation to insert a feeding tube into his belly, baby Mikey was discharged from the hospital.
“It’s been a whirlwind,” said an exhausted but glowing mother Friday, exactly a week after he was able to come home to his family’s Amherst house.
But the miracle baby is far from better — and the Kasprzyks are in desperate need of help.
Baby Mikey has to be watched 24 hours a day because he is in constant danger of choking to death.
The Kasprzyks have qualified for 16 hours of daily home nursing care for their baby. They have one nurse who works four overnights for them, but they have not been able to find one who can do the other three nights. That means the Kasprzyks have had to take turns staying up all night with Mikey and giving each other time to sleep, while trying to take care of their other two children, Emme Paige, 3, and Michailey, 6.
“It’s tough on the family,” Michelle Kasprzyk said, as Emme, wearing a constructionpaper crown, jumped on her lap for a little cuddling time. “I really feel like my two girls are losing their mother.”
The complications Michelle Kasprzyk and her son experienced during labor have turned her whole family’s life upside down, she said.
“My best friend put it best: You have to find a new normal,” she said.
Michelle Kasprzyk recounted what happened at Sisters Hospital.
After being induced because the baby was so large — he was 9 pounds, 4 ounces — amniotic fluid somehow entered the mother’s bloodstream.
The unpredictable complication caused Michelle’s cardiorespiratory system to collapse.
Her blood pressure plummeted, her blood’s clotting abilities went haywire, and her organs began to shut down.
The doctors at Sisters performed a delicate, emergency Caesarean section, saving both mother and child.
The family would later learn that only 4 percent of women who suffer an amniotic fluid embolism survive and that it’s even rarer for both mother and child to survive.
Kasprzyk endured several more life-threatening complications.
At one point, doctors readied the family for the possibility of her death, and all of the Kasprzyks knelt on the floor of her hospital room, praying for her recovery.
Even Michelle thought she was going to die. She used sign language (which both she and her husband happened to know) to say to him: “Can you raise the girls by yourself?”
She had a grand mal seizure, a heart attack and contracted an aggressive and hard to treat bacterial infection.
But she managed to live.
A nurse at Sisters told Michelle: “You were the sickest person we’ve ever seen live.”
Baby Mikey beat the odds, too, and the Kasprzyks credit their doctors at Sisters for the miracle.
The complications also affected Baby Mikey — his oxygen supply got cut off, causing damage to the back of his brain.
It has left him at high risk for cerebral palsy, mental retardation, blindness and deafness, although doctors don’t know if he has any of those conditions.
It also immediately left Mikey without a gag reflex or an ability to swallow, which means he cannot eat and is in constant danger of choking on his own secretions.
He can only breathe through a tracheotomy, a surgically made opening in his throat.
Every few minutes that Mikey is awake, a gurgling sound emerges from the hole — signaling that secretions are building up.
The Kasprzyks — or one of the home-care nurses they have hired must then rev up their noisy suction machine, lower a thin tube into the tracheotomy hole and clear out the potentially dangerous material.
When he’s asleep, he needs to be suctioned less, maybe five or six times a night.
He is always connected to a monitoring system that keeps tabs on his heart rate and breathing. But there’s no guarantee it will work every time and the tracheotomy itself can get clogged.
Mikey also can’t cry out loud because of the tracheotomy, which would signal if he was in distress.
It all means someone has to stay awake, watching him, at all hours to make sure he doesn’t suffocate.
With the help of Sick Kids (need) Involved People of New York, a nonprofit that works with families with medically fragile children, Michelle and her husband, Michael Kasprzyk, have qualified to receive Medicaid benefits for home care for the baby.
The Kasprzyks are extremely happy with the nurses who have come forward so far, but they have had a difficult time finding a nurse or two, at the licensed practical nurse level, to work overnights on Sundays, Tuesdays and Thursdays.
Margaret Mikol, executive director of SKIP, said it is a problem shared by many other families with special-needs children as the number of nurses across the country dwindles.
“We have many, many sleepless families,” she said. “It is truly a universal shortage. People are leaving the profession. There are fewer and fewer nursing schools.”
In the meantime, the Kasprzyks are doing what they can, with Michael taking most of the overnight shifts because Michelle is still recovering from her ordeal.
“I try to stay up until midnight or 1 a.m., and he sets his alarm and comes down,” she said. “It’s basically just, ‘Good night,’ and ‘Good morning.’ We don’t see each other.”
Nurses interested in the overnight shifts are asked to contact the family through nurses@thinwires.com. To learn about the Kasprzyks’ journey, see their blog at www.mikeyslove.blogspot.com.
mbecker@buffnews.com
