Changes & Blessings, part 4

And I did, I listened most of the night, I woke several times and I slept very little. She made it through without a glitch. I thanked God and our doctors as she walked out of her room the next morning. The "emergency medication" has worked well. We give her a form of valium before she goes to sleep on nights that her seizure threshold is being espially challenged. We now know some of the signs of her being in danger and the valium prevents the seizures when Teale is most venerable. We joke that the other person who needs a valium on these scary nights is me. But of course I need to stay alert and on my game, so I will not even have a glass of wine to settle my nerves on such nights. Mark doesn't or at least never has awoken when Teale is in a seizure in the middle of the night. It has always been my Mother instinct that has suddenly been startled awake to hear the awful sounds. That is one of the many things that I think about when I have been away from home overnight. I always ask Mark to keep the monitor close & to turn the volume up. I have been away from home alone very few times, but the needed breaks are often a catch 22, as the stress of being away is there too. I worry much too much. The day after the seizure was Saturday and all went relatively well. Teale was a bit grumpy and moody, as is often the case the day after a night we have given the valium. She seems unsettled, tired but won't rest. We get through the day and night falls again. I am anxious to get to bed, fatigue from worry and lack of sleep is hitting me hard as the evening comes. We decide to give the valium again as the medication levels have not had enough time to increase. We know this means the next day Teale again will be crabby, moody, tired, but we also know a seizure can be life threatening for a child like Teale. I sleep a bit better, mostly out of exhaustion, my body does what it needs. The monitor still a bit louder than usual, but I am less worried about another seizure coming. Teale wakes early on Sunday, anxious to get out of the house, Mark and she often hit the local grocery store on the weekends together. Mark likes grocery shopping and for the most part so does Teale. He is not gone long when I get a disturbing text "She fell over on someone. We are now upstairs sitting and having breakfast." I call Mark for details and my heart sinks as he describes Teale's strange unsteady behavior. The description sounds neurological to me and I decide to call her pediatricians office. While I gather information and talk to the doctors another text comes in from Mark. Teale has vomited at the store, another neurological sign. Mark now believes Teale is in small multiply seizures and we are quickly directed to get to the emergency room at the hospital. I begin to work out what to do with my daughter Gwenn who is just nine years old. My Mother in law also lives with us and needs care too. A whole day away would mean she would not eat or drink anything on her own. Her ability to take care of herself has declined badly, so I get in touch with Mark's brother asking for help. I need to get to the hospital also. Mark should not have to be alone, ER with Teale is a tough place to be. Teale has vomited on her clothes, she has nothing to keep her occupied while they wait and her behavior in such situations can be extremely challenging. I have already asked for prayers on my Facebook page and friends offer to take Gwenn. Beau is out but I reach him saying I may need help. My kids and I have a deal, no matter where they are, if Teale is in trouble, they want to know. One time Teale had a seizure at church, we had to call an ambulance and Beau was in Sunday school at the time. He just knew in his heart the ambulance was for Teale and he was upset that Mark and I had not pulled him from Sunday school to let him know. So as I spoke calmly to Beau, hoping this was nothing, I knew his fear was probably high also. Uncertainty, it is our life, but in these times it is heightened. Soon after Mark gets to emergency, Teale vomits again, this time all over her treasured American Girl Doll catalogue. She goes into a rage, it is covered with vomit and Mark has to throw out the catalogue. The rage itself is not her normal kind of rage, causing Mark more alarm. Mark asks me to try and locate another catalogue, so  I throw the request on my Facebook page, knowing my dear friends will find me one if at all humanly possible. If there is one thing I have learned through the use of social media is how much people care about my family. It is an amazing thing and it reaches far and wide. I am often overwhelmed by the support and love we receive, both publicly and privately. I have had many relationships forged because I am so open and honest about our struggles. People may not be as willing or as able to share their challenges, but they have told me that they appreciate my sharing our life. It is not always pretty, there are things I have shared that others may find appalling. But it is almost like my calling in this life with Teale. I feel like her life, our lives with her, teach much. It was not very many years ago that you would not have seen a kid like Teale in the community. You would not have know the families pains, joys and challenges raising a child with multiple issues. So sharing our journey both in this blog and on Facebook has been somewhat therapeutic for me. It connects me to people like me and it teaches people who otherwise would not understand. The offers come in on my Facebook page and privately texted to my cell also, many are trying to find me an American Girl catalogue to take to Teale at the hospital. Moments like these that may not mean all that much in an everyday life, but I see the amazing love of those who want to help my daughter. ~to be continued

Something to think about...

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...