Tuesday, May 17, 2011
As I sit at the kitchen table filling pill boxes my Mother in law marvels at the amount of medicine. Sometimes it does blow me away, the amount of medicines my daughter Teale is on. Twelve years old and she takes usually around 12 pills when she gets up & 12 pills right before bed. The numbers vary depending on what we are trying to stabilize; her moods, her sleep or her gastric issues. She is not always easy about this handful of medicines we hold out for her to take two times a day. There are times we argue, we threaten, we bribe & then there are the times I have thrown the water at her because she wasn't cooperating! It's embarrassing to admit, but if she is in a bad cycle of not cooperating about taking them, it wears me. There is no option about taking the medicines, her system needs them or things would be worse. Her seizures are horribly long when she has them. The shortest are 45 minutes and the longest are an hour and a half, with the first one being over two hours. There is nothing worse for me than watching my child seize & having no control. We ambulance her into the hospital if we are over 20 minutes, but there really is no "if," when Teale's body seizes, it is always big. The current medication for her seizures has been a miracle, she hasn't had one in almost 2 years! We are blessed to have found the right medication, but getting it in, well that can be a struggle. Sometimes we just want to say "Forget it, I don't want to fight about it, fine, don't take them!" But obviously that is not an option. Seizures are not her only issues, but it is probably the one that scares me the most. Her seizures are always nocturnal, meaning she has them in her sleep. Sleeping for Mark & I can be tough, as the fear of her having one while we are out cold is always there. They are generally brought on by sickness, her seizure threshold drops drastically when she has an infection or a fever. The first grand mal was by far the scariest, Teale was four years old. I had just nursed out baby Gwenn who was about five months old. She was laying in my arms in our bed & I heard something. Our next door neighbors were brand new & their dogs were barking, so I couldn't get a handle on what I heard. The fact that I was comfortable with my sweet baby made me even less likely to move quickly to check on the noise. Finally I gave Gwenn to Mark, feeling a very strong nudge to go see what the noise was. What I found was Teale in a grand mal with vomit all over her. I screamed for Mark, we quickly called the ambulance & I ran to my neighbors house in my bathrobe to get help. We needed someone to take care of Gwenn & Beau so we could both go to the hospital. Mark was calm, I was a basket case, her color was off, she was foaming at the mouth, we knew she may have aspirated vomit and the seizure wasn't stopping. The ambulance took forever as I paced outside in my bathrobe watching them go toward the circle at the end of our street instead of heading toward us. My neighbor's husband ran like I have never seen a man run to get them to come to my house. Mark continued to stay calm, as terrible thoughts went through my head & I sobbed. I was sure we were going to lose her or she would be more brain damaged if they got her out of it. Mark prayed over her & told me to get dressed so I could ride in the ambulance. I stood in my room naked, sobbing & apparently was holding my underwear upside down when my dear friend & neighbor walked into my room to help me. She took the underwear & held it for me to step into, a forever bonding moment that we laughed about for years. Mark had told her to go help me & for good reason, I was a mess. I took off in the ambulance with Teale, wondering if this would be my last moments to be with her? Mark was following in our car. When we got to the hospital she was whisked away and medicines were administered to get the seizure to stop, but it would not stop. We called our minister, terrified to be alone. She came and prayed with us as we anxiously waited. When the seizure was finally under control, tests were taken to see if there was more brain damage caused by the two plus hours of seizing. Amazingly her MIR looked similar to her previous ones, so we were hopeful. X-rays were taken to see if she aspirated vomit, which she had, so she was treated for that. We were finally given a room & it was decided Mark would stay, as I was still nursing Gwenn, who had never been away from me. My sister had come to my house, taken Gwenn & Beau off my neighbor's hands & driven back to her house. Before she left my house she locked it up like Fort Knoxs. Little did she know in Mark's haste he had grabbed keys that didn't have a house key. It was 3AM when I got back to my house & discovered I couldn't get in. I was emotionally & physically drained & just wanted my bed. Waking a neighbor again seemed unfathomable, so I did the only thing I could. I got a ladder out of the garage & put it up to our low roof & broke in through a window. Gwenn was asleep in her car seat, Beau had stayed at my sisters house. Often I think about that move, stupid beyond words, what if something had happened to me, my baby was in a car & no one would know. But as I said, I was desperate for my bed. Morning came, although I don't remember sleeping, I called the hospital & Mark said Teale was still sleeping. The medications and the seizure had knocked our daughter badly. She had vomited many times after I left, but was finally at peace. All tests were looking positive and the doctors thought she would come out of it unscaved. Amazingly, they were correct, that evening we brought home our daughter with her boundless energy. The neighbors all greeted us in the driveway with tears in their eyes. Teale the fighter had won another round!!!