Epilepsy
By Roseanna Paulin Joseph Lawrence Michael Paulin was born on April 12, 2004. Joey was 9 pounds, 3 ounces and 21.5 inches long. Immediately we noticed that Joey's eyes would roll back into his head. A team of doctors told us that Joey was being admitted to the NICU. We were later told that Joey had an immature nervous system, and if the rest of his tests were negative then we could take him home in a few days. On April 15, we left the hospital without Joey. We received a phone call later that night at home from his nurse; Joey had stopped breathing and he would have to stay a minimum of three more days in the hospital. The next morning, Joey stopped breathing again. Now the earliest we could take him home would be April 19. On June 12, after midnight, Joey had his first seizure at home; not only that, his lips were blue and his eyes had again rolled back into his head. A frantic call to 911 and 45 minutes later, we were at Children's Hospital. None of the doctors could give us an explanation for the seizure. Unfortunately, Joey had another seizure early the next morning and was admitted into ICU. He stayed for one week, and we were sent home with a diagnosis of epilepsy. As awful as this was, we now wish all Joey had was epilepsy. The next five months were filled with numerous hospital stays, one of the longest being the entire month of September 2004 when Joey decided to quit eating. It was in September 2004 that a muscle biopsy was performed to rule out a Mitochondrial Defect. In November 2004, we were told that Joey had Mitochondrial Encephalomyopathy. Joey's doctors informed us that Joey would never walk, talk, sit or stand and his life expectancy would be just four to seven years. Another surgery and further testing performed by Dr. Shoffner in Atlanta in February 2005 confirmed Joey's original diagnosis. We were told that Joey's disease would progress as he grows, and his seizures will ultimately be his demise. In November 2005, Joey lost the ability to swallow and underwent surgery to have a G-tube (Gastronomy tube) placed in his stomach. In July 2006, Joey underwent a six hour operation to put in an IV port and redo his fundoplication. In February 2007, Joey suffered a 72 minute Grand Mal Seizure at Children’s Hospital. Joey remained in ICU for 15 days while intubated and in a coma where the seizures continued off and on for days. After 35 days in the hospital, Joey returned home on March 29. A seven-hour seizure in September 2007 had all of the ER doctors telling us that Joey would not make it through the night, but 18 hours later Joey woke up with a smile on his sweet face. In the past four years our family has made more than 20 calls to 911. But on Joey’s good days, he is full of smiles and has a very mischievous personality. He loves the movie "Finding Nemo" and enjoys rolling around on the floor. Joey cannot walk, sit or stand and is unable to talk or swallow. However, Joey does know who is family is and can be very expressive with his beautiful brown eyes. Having a child with a terminal illness is not easy. There are days that we are unable to hold back our tears. We know Joey was sent here for a reason, and he is truly a gift from God. Joey has taught us acceptance, patience, and most of all to take great joy in the little things. When Joey rolled over for the first time (Fall 2005) my husband and I cried. We no longer take anything for granted. On May 5, 2008, the City of Alabaster and the Alabaster Fire Department gave Joey two very special honors: Mayor David Frings declared April 12 (Joey’s birthday) as Joey Paulin Day in the City of Alabaster, and the fire department made Joey an official honorary fireman. Children's Hospital has been our home away from home since June 12, 2004. Specifically, the nurses on 4SE and in the SCU have become like family, and Joey's neurologist, Dr. Jan E. Mathisen is definitely one of Joey's heroes. Of course, we'd rather have our little guy at home with us, but we know he is in wonderful hands at Children's Hospital. Each time Joey is discharged, he has a smile on his face, and that's because of the wonderful care he was given. Joey has been admitted to Children's Hospital over 20 times in his four years of life and has had seven operations. Joey is often rushed to the ER via ambulance, and it’s rare that we get a doctor or nurse that isn't already familiar with him. Joey's illness causes him to have life threatening seizures and he often forgets to breathe. Our first few visits to Children's Hospital in 2004 were terrifying. But now, after being there so much, it's not so frightening. So many of the doctors and nurses know Joey and more importantly know exactly how to take care of him. You can't put a price on that kind of care. Our family feels so blessed to have such a wonderful hospital so close to us. Visit 4SE and just mention Joey's name: it's almost embarrassing how his nurses go on and on about our little guy. But at the same time, it makes me feel good that he's loved and cared for so much by such an amazing group of nurses.
