Sleep, or Lack Of

(Picture is of him before the severe seizure in 2015, but after his seizures started occurring. We were doing a three day observation to figure the seizures out. There is no way we could ever get all them wires attached now! Hell, he won't even wear his glasses anymore!)

So many people have been interested in Jayden’s sleep or lack of sleep I should say. Lol. As most of you know, this boy can stay up for days on end straight without having a single problem due to lack of sleep! Lol. Prior to December 17, 2015, Jayden’s sleep habits were pretty normal. He would go into bed around 8 pm or so then play in his bed by himself until he finally fell asleep. There was no crying or getting upset; he just knew that it was bedtime and there was nothing he could do about it. He would wake up early in the morning, which was fine because we had to get up each morning to take Krysta to school anyway. Shortly before the date I mentioned already, he was staying up later some nights until 10 or 11 pm, but nothing major.

On December 17, 2017, Jayden had a severe seizure in his sleep (they all occurred during his sleep). I have discussed this in another blog entry, but for those who have not read it, he seized for over 2 hours. The hospital did everything in their power to stop the seizure, but nothing worked. Finally, after over 2 hours, his seizure stopped, and they sedated him as he was also on a ventilator. At this point, the doctors did not think he was going to live. Of course, he did live. However, since then, we have noticed some major changes in him including stopping doing things he did prior to the seizure (e.g., rip up paper, willingness to do certain activities), his behavior became more extreme than it was before (I am going to make another entry about his behavior), and his sleep schedule became nonexistent.

So, after this seizure, he became severely aggressive for about 4 days (likely due to all the medications pumped into him). However, once he woke up from sedation and the ventilator was removed, he stayed awake for about 3 days straight. At that time, he had never done anything like that. It was a difficult 3 days due to the severe aggression we were dealing with as well. David and I would scream and fight because David wanted him admitted back into the hospital because he thought something was seriously wrong due to his behavior. I knew it was likely the medications and the hospital agreed each time I called them while they heard David screaming in the background lol.

Things were insane. We definitely were not prepared for the behavior and sleep changes. After that first week, the severe aggression went away, and we were left with more severe behavior issues than he had before, but nothing like after he came home. We could deal with the behavior changes that came. However, we were not expecting the sleep changes at all. After those first three days of no sleep, we thought, okay, he will go back to normal, it may just take a few days or weeks. As the days, weeks, months, and years went on, we finally realized this is our new normal. He is not going to go back to his own normal. Why? None of us, including his doctor, have any idea why. We have been down the road of testing, medication, and waking him after only a few hours of sleep to “reset” him; however, nothing works. Sleep studies cannot be conducted because, well, he doesn’t sleep and his behavior is severe so getting him hooked up to machines is out of the question. Although they could sedate, the doctors and I do not think it will yield accurate results as the sedation will calm his brain; thus, cause all the problems to disappear.

So, we just deal with it. I sleep when he sleeps. If he stays awake for three days, I stay awake for three days. If he sleeps for 24 hours straight, I sleep for a few hours and stupidly enjoy a peaceful day knowing I am going to regret it later lol. If I am beyond my exhaustion point and can no longer stay awake but he is still going strong at 34 hours awake, I sneak in the room and get a nap in while David takes care of him. No matter how long I am awake for, a good hour of sleep can keep me going for a few more days lol. Krysta sleeps a normal sleep schedule, but often gets woke up throughout the night because of Jayden’s screaming lol. However, she gets the sleep she needs. Trust me; she is not one you want to lose out on any sleep lmao. David, well David sleeps when Jayden sleeps unless it is during the day then he may miss out on sleep due to doing things with Krysta or getting his work in for the day, but since Jayden prefers me, David can pretty much go into sleep at any point he needs to. Our life is crazy, we don’t live by the normal day/night schedule that most people do, but we make it work. We will continue to make it work until the end of time or until something is finally figured out and Jayden gets on a more normal sleep schedule.

#Seizure #sleep