Emily Anne Czerkawski
Three months after bringing home our fourth child, Emily, from the hospital, initial chaos had started to become routine. Emily began to develop congestion with red eyes and lips that would come and go. Initially, she only had a fever for one day, so it appeared to be a cold. Two weeks later, she suddenly developed a wide-spread rash and high fevers, so we rushed her to Wolfson Children’s Hospital, where she had a full work-up.
Although she was admitted with viral meningitis, doctors immediately suspected it could be an atypical case of Kawasaki disease, and consulted pediatric infectious disease specialists. Emily was treated for this rare disorder, but because of her young age, she did not respond to the treatment. It was as if a fire was raging in her body, causing a fever that lasted for 25 days.
Her skin was so irritated that we could not touch her, and could only carry her while cradled on a pillow. Three weeks into the illness, she developed coronary artery aneurysms, as well as an aneurysm in her right femoral artery (the artery to her leg). When her leg developed a blood clot, turning purple and cold from the knee down, doctors moved her to the PICU and started a new medication. This medication stopped the progression of the aneurysms and alleviated the fevers. The firestorm had been partially subdued. Emily was released after almost six weeks in the hospital, returning home to take blood thinner shots and aspirin.
The following month, a routine echocardiogram showed that fluid had built up around her heart which needed removed. We had to stop the blood thinner in order for doctors to drain the fluid, and then an aneurysm clotted and Emily had a heart attack. She was placed on a ventilator and went into heart failure. The doctors’ aggressive therapy began to turn her around, but then a week later, she developed ventricular tacchycardia (a high heart rate) and had to be “shocked.” “We got her back,” the doctor said. It truly felt like a roller coaster! Two weeks later we brought Emily home with the instructions to “just enjoy her.”
Emily was listed for a heart transplant. On 9/11/01, planes and helicopters across the nation were grounded. In the back of our minds was the concern, “What if there is a heart?” Unknown to us, over the next few months, two matching hearts were declined as the doctors decided to “wait and see.” After five months, they decided that she was well enough to keep the heart God gave her, and she began to grow and gain weight.
The care that Emily has received from doctors, nurses and technicians at Wolfson Children’s Hospital since that time has allowed her to go to school like everyone else, participate in non-contact sports, and bring joy to numerous family members and friends. We have certainly brought her home and “enjoyed her,” thanks to the grace of God and to all of the Wolfson Children’s Hospital staff!
