Seizures
Earlier this month I mentioned that I am going to need all of your support and prayers later in the month. Today is that day. This is going to be a long one, and I'm sorry for that. To start at the beginning, October 28, 2012. This day was normal just like any other day. However, I woke up in the middle of the night to Jayden choking and making scary sounds. I flipped the light on, and he was laying on the floor in vomit, his eyes were open and fixed to the left, and he was shaking. I've watched people die before, unfortunately, and I completely thought he was dying. I had no clue it was a seizure. The ambulance came, and he continued the seizure all the way to the hospital. They finally got it to stop after an hour. He slept until about 1 pm that day. I was so scared. I had no idea what to expect when he woke up. Finally, he woke up and went right back to his normal self. This was the beginning of my non-sleeping days.
After we came home, I went crazy. I threw away our beds and made my entire bedroom floor into one huge mattress. This way he could never fall out. I did nothing but stare at him while he was sleeping for months on end. Every twitch he made, my stomach would be full of knots, and the diastat (emergency seizure meds) was open and in my hand ready. Months went by and no seizure, but I still couldn't relax or sleep. My life has been 100% ruled by the fear of seizures since 10/28/2012. Over the next year, he had a few more seizures in his sleep. I was always sitting beside him when they started, so I administered the diastat within seconds of them starting. These seizures lasted 30 minutes or less because I was sitting there.
On December 17, 2013, he had another one. Again, I was right there, still watching him sleep 1 year after the first seizure in 2012. Once again, I gave him the meds, and the seizure stopped. Sometimes I would have to give him multiple doses. But to tell you I know more about diastat than his doctors is an understatement. As he slept most nights, I sat with a laptop researching and reading clinical trials, so I knew how far I could push these meds while waiting for the ambulance to get here.
During this year, and a few years before this, I was also a single parent. Many of you know my husband is a recovering addict, and these were the years he was gone. So, I was left by myself with two kids to care for, and mentally, I was drained due to these seizures or just the fear of them. It seriously became my life. In the day we were okay, but the second he fell asleep, I did nothing but watch him.
Then, something strange happened, for the next two years, no seizures. The doctor claimed that after one year of no seizure the risks go down, but after two years, he may never have one again. As the months went by, my feared dropped. I was still sleeping with him, but some fear was gone. Eventually, about a year and a half after his last seizure on 12/17/2013, I moved him into his own room and bought cameras. David was already sober and back by this point. Things were okay. We'd watch him on the cameras at night, and we had a seizure monitor that would alarm if a seizure occurred.
As we approached the two-year mark of no seizure, we met with the neurologist. She told me there was nothing to fear. My response was if you say so. But she was persistent that seizures were a thing of the past. As we went to bed that night, I felt good. David fell asleep on the couch and me in the bed. However, I should have never believed that doctor.
December 17, 2015, at the exact same hour as two years before on December 17, 2013, Jayden had a seizure. This time I was not there to administer the meds within seconds like I always have been. This time it took several minutes for us to wake up. When we did, I knew it was bad, extremely bad. He had already passed the stage where the meds would help him just like his first seizure. I pumped him full of diastat and klonipin, multiple doses before the ambulance got there. So much that David was yelling at me, but I knew, from my research, how far I could go. And I went far, I emptied many tubes into his body as he was shaking, and his eyes were locked in an upward position. I knew this was so bad. As I began to run out of meds, I threw the last klonipin in his mouth as the ambulance arrived.
They knew it was bad. They saw him many times before. They didn't ask questions, they grabbed him, and we all ran for the ambulance. They couldn't fit us all, so I opted to drive because, at that time, David was Jayden’s favorite person, so I wanted him with him. As the ambulance and I dove 100 mph to get there, everyone on the roads cleared the way for us. I had David on speaker to know what's going on. The seizure is still going strong, and they are continuing to administer meds.
I'm screaming at my Dad, who passed away earlier that year to please save him. I'm begging him to save him and if someone has to die, then make me wreck this car right now, and I will go.
We get to the hospital and an hour goes by. They are giving him doses of stuff that would kill a 300-pound man, and it's not phasing that seizure. At this point, worrying about breathing is not an option for them. They hook him up to a ventilator and continue to push high doses of these meds. They bring the Chaplin in because they tell us he's not going to live. I tell them all to fuck off; I tell them that they will not stop until the seizures stop. Finally, at well well over the two-hour mark, well after the doctors themselves gave up hope, the seizure stopped.
They sedated him so it wouldn't start again. I knew it wouldn't; they never start again. So, there he lays, on a breathing machine, pumped full of enough medications to kill all the adults in the room, and now sedated. They wanted to keep him sedated for the day. I said no. The longer he's out, the longer he's on the machines, the less likely things will be okay. I got loud, I got mean, and I turned into the rule maker at the hospital that day. They may be doctors, but damn it, I'm a parent who spent 3 years preparing for this exact situation. And I said turn the sedation off a few hours later!
The Dr came in; he wanted to do a brain scan again to make sure there were no seizures before he stopped the sedation. No seizures. He agreed to stop the sedation. He told me not to be alarmed if he didn't wake up. I told him not to go far because Propofol begins to leave the system in 10 minutes and that's when he'd be trying to pull his breathing tube out. The Dr looked at me with a sad, hopeless look like he felt so bad for me that I was not understanding what was going on, but what he didn't understand was that I knew way more of what was going on than he did. After all, I told my dad he better save this boy, right!
Ladies, 11 minutes after that sedation stopped, Jayden was pulling his breathing tube out, and within an hour and a half, they were discharging him from the PICU. He was more aggressive than I ever seen. The next week was hard. But I didn't care. Pull my hair, scratch me up, bang your head, because you, MY BOY, are HERE to do it all! His behavior has been severe ever since this day. I remember walking through the emergency room to leave that day, and no one believed or understood how we were doing so. They all knew he was leaving for the funeral home, not in my car. But, I knew what a fighter that kid is.
Now the reason for this post and the reason I need your prayers, love, and support, tomorrow is December 17, 2017. Exactly two years from the last seizure once again. I am scared out of my fucking mind. I have given him Christmas gifts already because I fear he will not be here for Christmas. I put off getting tires on my van until yesterday because I wanted them brand new in case one of us had to make that 100-mph drive in the snow. I have not planned beyond tomorrow because I am so scared of what the hell may happen tomorrow. I could go on and on about what is going through my mind right now, but I won’t. I just ask that you, please keep Jayden in your thoughts and prayers today and especially tomorrow. I will be watching him all night tonight, so if something does happen, I will be right there. However, this time I am better prepared with Versed as our first line of defense for seizures at home. And you guessed it, I know all there is to know about this medication! Again, please send positive thoughts his way. I do not want tomorrow to be another horrible day in our lives. Thank you.