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Sunday, March 4, 2012

Changes & Blessings, part 3

Mark gets home and I feel much relief. He is home not only for the night, but for the weekend and The Presidents Day Holiday on Monday. If we get through the next few days without a seizure, her medication level will have increased and hopefully with that, she will then again be seizure free. It has been almost two years since Teale's last seizure and even that was a fluke. It was a horrid mistake, I mostly blame on myself. I manage medications, I get the prescriptions filled, refilled and the weekly pill boxes supplied with what current medications Teale is on. When I filled Teale's weekly boxes that week, almost two years ago, there was only enough of her seizure medication to fill a few days. I filled the rest of the weeks medications anyway, figuring when I picked up the seizure medicine I would add it to the other pills in the box. I had done this same thing several times and it had always been ok. Well, there was not another refill on the seizure medication bottle that week, the doctor didn't get back to the pharmacists in a timely manor, life got me and I forgot. Also we had help for Teale in the house often back then, so between Mark, myself and the respite help, one of us gave Teale her her medications out of the boxes I had filled. The trust was that I had filled correctly, so double checking the handful of pills being dispensed was uncommon. Often it was a tough thing to get Teale to take the pills, so the focus was on her cooperation, not on what was being given. Somehow we all missed that the seizure medicine was not in the several pills we were dispensing to Teale. I woke in the middle of the night to Teale seizing and it hit me that I had never picked up the medication and filled it into the rest of the weekly pill boxes. She had missed at least two doses and maybe it was three. The guilt of that still haunts me. She had been seizure free awhile at that point and I blew it. It was horribly unresponsible of me, my daughter counts on me and depends on me and I caused that seizure. But that was almost two years ago and as a result I have changed how I fill medicine boxes and we double check what we are giving. I may fill without having a whole weeks supply still, but now I write it down on our weekly calendar when the particular prescription must be picked up by. Filling the weekly boxes is a big job, her medications are constantly in flux and it has had a certain fear to it since that mistake. There are medications we "play" with depending on how she is doing. We have full doctor permission to change some things on our own as needed. Then there are the ones that are a constant and must remain stable, given to her at approximately the same times daily to ensure the best consistent levels of the medication in her blood. Teale has blood draws often to check these levels, that is how we knew her seizure medication was slightly low when I talked to the doctor about the day seizure. Because of it being slightly low, we raised the medication by 50mg. A very slight increase if you consider she is on 500mg two times a day. But the hope was that it would be just enough to stop the seizures. I already added the increased dose to her boxes, knowing after a week on this dose we were to increase another 50mg. The evening went as usual that night, dinner, Teale's nightly car ride with her Dad, TV, take her medications, pj's, stories, etc. As we put the girls to bed I double checked the monitor in their room, praying it would wake me if God forbid she go into one of her grand mals in her sleep. The stress of a child seizing is huge for any parent who lives with a child diagnosed with Epilepsy. It is a horrid thing to watch your child in, for me I believe it is mostly the lack of control. I can not control seizures, I can not make them stop when they are happening and I hate that. I have to watch it played out, worked through, as it may be. Teale doesn't seize for seconds or minutes, she has seized an hour and a half. The shortest on record grand mal for Teale has been about thirty five minutes. Imagine watching your child seize for that long, not knowing when or if it will stop. If the emergency medications do not work at home within fifteen minutes, (every time so far, they have not) we call 911. It is wretched as we wait for the ambulance crew to come and take Teale. Always it has been the middle of the night, always I am startled awake by a sound that isn't quite right, running to her room to find her seizing. Vomiting and loss of continence accompany the seizure. The fear she will choke on her own vomit in her sleep, the fear I will not awake to hear my daughter in trouble. These are stresses I live with. This is one of those things that when someone says to me "everyone has problems" that I think about. Do you live with a constant fear of the loss of your child in their sleep? My sleep is sporadic, I sleep in fear often, I wake in fear too. Did I not wake in the night and she had a seizure and choked to death? These are real thoughts I have, this is how I feel. When Teale sleeps in, when she sleeps later than her usual, I listen to the monitor for her breathing. If I can not hear it, my heart jumps, panic may set in, I start to question if I slept too hard. I can't tell you how few times Teale has slept late in her life, but each time both Mark and I were scared to open her door. We were scared to wake her if she was just sleeping and we were scared at what else we may find too. Teale has cheated death many times, at birth and several times since. She is my miracle child, who I have put much effort into. I refuse to lose her to a seizure. As I go to bed that night, I know I will not sleep well. I know I will keep the monitor a little louder. I know I will wake often and reach for it to listen to the sweet sound of her breathing...~to be continued...

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