Jayson was born full term without any knowledge of health complications. Doctors immediately started telling us that there was something wrong with Jayson. He didn't look like other babies. We entered our first round of genetic testing and Jayson went home with us where we loved and cuddled our sweet, healthy baby.
At nearly 2 months old, Jayson caught RSV. His condition got worse quickly, and he stumped the doctors. Little did we know this would become a common occurrence. He was taken by helicopter from Riverton Hospital to Primary Children's. He spent two weeks in the hospital recovering, and was still in need of oxygen to return home after our long hospital stay. Two weeks later, Jayson seemed to be getting worse again, and our worst nightmare became our reality. Our sweet baby boy stopped breathing in his mommy's arms. After a frantic 911 call and CPR, our miracle boy came back to us. We spent the next two weeks at Primary Children's with a positive virus panel for RSV but trying to figure out what was really happening. We finally got in touch with a specialist and learned Jayson has a floppy airway condition called laryngomalia, he had been aspirating and was classified failure to thrive, and he had severe GERD. Our world changed quickly as an NJ feeding tube was placed in our baby and he was put on 3 liters of high flow oxygen as his baseline to keep him alive until surgery. We were sent home with all sorts of medical equipment to manage. Round 2 and 3 of genetic testing left us without answers and revealed to us that our little miracle had a rare condition, and we may not ever learn what it is. Jayson had surgery to help with his floppy airway, but did not seem to help as much as we had hoped. We had just started to get adjusted to the medical equipment, doctor's appointments, therapies, and our son's diagnoses when he surprised us with one of our family's biggest trials; seizures. In May of 2011 Jayson had some seizures in front of a couple of doctors and they got him in for an EEG right away. The results said normal, but the doctors knew what they had witnessed was anything but normal. We got right into a neurologist and Jayson started his seizure medication that really helped him. Over the next couple of months, Jayson's seizures would randomly escalate, we would increase medication, they would go away only to come back again a couple of months later. Clinically, the neurologist was confident he was having seizures, and it seemed he was developing new types as well.
In December of 2011, we were reminded once again how fragile life can be when Jayson once again stopped breathing for a couple of minutes while in his carseat in the car. A new MRI revealed a condition called Chiari Malformation. His cerebellum in his brain was being compressed, and there was absolutely no spinal fluid passing through. In January our brave man underwent decompression surgery which has helped him more than we dared to imagine. Jayson's oxygen requirements have gone down, he passed his swallow study and is now eating and drinking by mouth. He is also developing and meeting milestones we feared he may never meet.
One big black cloud remains over our heads: seizures. They have been escalating and in March of 2013 we got an abnormally abnormal EEG. Although the abnormality was not common for kids with seizures, the neurologist says that he could now say he is officially having seizures. Since then we have been living a crazy life of experimenting with different medications and dosages, hoping and praying something will make them stop.
Despite the overwhelming amount of challenges that Jayson has overcome, he has done it with a smile on his face! He is such a happy, determined boy. After 13 hospital stays and 6 surgeries, many ER and doctor visits, he is still fighting against the odds and showing us that he is going to prove so many people wrong. He will continue to surprise and inspire all who meet him and hear his story. Jayson truly is a little hero.
More about Jayson can be read on his blog: www.littlejsjourney.blogspot.com
To share your story about life with epilepsy, contact Syndi@epilepsyut.org.