Acute Demylienating Encepholmyletis
John had not been feeling well for a couple of weeks. We had seen our local physician several times. The first visit they said it was viral and he would just have to wait it out. The second time they gave us an antibiotic, but nothing seemed to be working. He would go from the bed to the couch and was walking less and less. He had no energy and wanted to sleep all the time. When we would move him he began to act like it was very uncomfortable. Almost like it hurt to move. On Saturday April 14th, we decided to go to Children's and take John through the ER. We didn't know what else to do. I thought we would be there overnight and be back home. But God had different plans. Dr. Hope decided after a round of blood work and X-rays that she would keep John. His white cell count was not good. She didn't know what was wrong but she knew it was something. Saturday night he woke after some ibuprofen and felt better. It seemed he was so much better. He wanted to watch a movie and ate. Sunday was bad and it continued to get worse. Sunday night he woke up but wouldn't talk. A momma's gut feeling told me something wasn't right. A nurse checked his vitals and he started falling fast. Many doctors worked with him and John ended up in PICU early Monday morning. After a CT scan the doctors realized that there was an extreme amount of pressure on John's brain. They inserted a ventricular drain in John's brain to drain the fluid off. He was on a ventilator to give his body a rest. The next two weeks would be a series of tests that finally ended up with a diagnosis of ADEM (Acute Demylienating Encepholmyletis.) We were in the PICU for 16 days. After five days of aggressive steroids, he began to get better. John had not walked for approx. 3-4 weeks so therapy began. We moved to a private room and started therapy twice a day; speech, occupational and physical therapy. John prevailed and the Friday before Mother's Day we came home. John continued to progress and quickly was out of his wheelchair and back to his old self. John's body was healed and he is a walking miracle. He has since had another occurrence in Nov. of 2007. He lost his sight but again a high dose of steroids and everything was back. It is now fall 2008 and John is a healthy six year old boy. Children's Hospital was a life saver for our family. No one ever thinks it is going to be their child that is sick. But it can happen and we are so blessed to have, 60 miles away, the best hospital for children in the state of Alabama. Everyone, and I mean everyone, that is associated with Children's touched our lives. We will forever be grateful. Dr. Ness, Ms. Yolanda, Ms. Sarah, Nurse Joy, Dr. Hope, Nurse Wess, Ms. Molly, Mr. Rhett and Ms. Emily, the lady that cleaned John's room could go on forever. We will continue this relationship for years to come.
