Wednesday, October 7.......Nicole had several small seizures throughout the night. They have taken her for the MRI to be done. She had to be sedated again so she wouldn't move while they did the test. I have to say, when she is awake she is not a happy camper! The nurses have quickly learned how to duck and move away from her legs!
It was a long day today. Nicole was so unhappy due to all the medication she was on and simply not feeling good. The results from the MRI were back and now we would find out what was wrong with our little girl. The doctor called us into another room and told us Nicole had a rare brain disease called Sturge-Weber Syndrome. There was no known cause and no cure. She would be placed on seizure medication in hopes to control her seizures. A neurologist would be by in the morning to try to explain everything to us. We were devastated. How could this possibly happen to our little girl? What did the future hold for us?
Early the next morning Dr. T, as we call him now, entered Nicole's hospital room and began explaining the details of SWS to us. He was pleased though that Nicole had developed so well and assured us we would work together to maintain the lifestyle she had grown accustomed to. He did explain that he had found calcification on not only one side but both sides of Nicole's brain. His main concern at this point was to control her seizures and get her home.
Friday, October 9.........Well, with a stack of paperwork on SWS, seizure medication and our little girl we headed home not really knowing how our lives would be affected by all that had happened in a few short days. Donny and I were both still in a state of shock and trying to understand and deal with what God had given us to face. "One day at a time" was often heard in our house over the next few weeks and continues to be heard almost daily now.
Ok.....over the weekend and into Monday things were pretty hectic. Nicole continued to have small seizures that would last up to three minutes. You could have cut through the stress in our house with a knife. We constantly were on the phone with the doc's trying to regulate the Dilantin but nothing was working.
Monday, October 12....Nicole went into an eight minute seizure and we had to call EMS. She was sent back to the Baptist Hospital ICU for another stay. This seizure was quite the scare because it was the first grand mal seizure she had. I will never forget feeling the most hopeless feeling I could ever have knowing that I couldn't do anything to stop her. After a two day stay this time we are sent home with her Dilantin increased and at a level of 14.9. Talk about nerve racking!!!!! At this point Nicole's left arm and leg are really giving her trouble. She has a hard time using them. The doc's said this is due to all the seizure activity she has had.
Things started to look up for a few days.....Nicole was getting more and more stable each day. She began talking clearly and walking better but still continued to be pretty cranky. Who could blame her though!