The Sleeping Monster
8/17/2020
On bad days we often joke “Don’t wake the beast!” This is usually after hours, sometimes days, of crying, screaming and inconsolable behavior. Once he falls asleep, no matter the time or location, we work very hard to not wake our beast. Don’t get me wrong, we love him very much, but on these days he really earns the name. If the beast is woken, he is much more unhappy than he was even before his slumber.
Inside every beast, a monster sleeps. This monster is what created the beast. And just like in my favorite Disney movie, sometimes the beast is kind and loving and sometimes he is ugly and mean. He doesn’t want to be that way, he just can’t help it. There are many different kinds of monsters that make up beasts but ours happens to be the seizure monster. I won’t ever say one monster is worse than another because they all have their own special kind of chaos, but the seizure monster is a tricky one because there is no one way to tame him.
Our hibernating monster started stirring in January. We’ve tried hard to keep him in his slumber but he has seemed to be waking more and more these last couple months. We reinforced the bars on his cage, but over the last couple weeks he’s been breaking out. What do I mean by all this? I mean that we have tried multiple things to treat the seizures. We’ve called our nurse too many times to count and she has assessed him every time we felt we were in too deep. We’ve called his neurologist several times, adjusted medication dosages and we’ve called again when those weren’t working and more changes were needed. We’ve taken videos and we’ve sent videos. You’d think the hibernating monster would grow weak but he doesn’t. As a parent you spend your days on egg shells waiting for seizures. No matter how familiar you are with them now, it still breaks your heart every time. Because for a chronically ill child, you know this is disease progression. This is what the ugly face of progression looks like. It steals your child little by little, it spreads itself into their brain more and more and takes with it whatever it can. It truly is a parasite. A parasitic monster. And a lot of times it feels like there’s no stopping it. I am happy for all the smiles we see in Holden and for all of his moments of content, but it’s sad and frustrating to also watch your child sleep away most of his day due to the medication adjustments and seizure activity.
At this point, we were seeing about ten seizures per day so Holden had an ambulatory EEG. This was kind of cool because it was the first time we’ve been able to do it at home and that does make things a bit easier, especially with having other children. I was very worried that the leads would fall off at home and the study would need to be repeated, but it all worked out. The results we received were what we were expecting and more because he was also having seizure activity that we weren’t seeing. We increased his VNS settings, increased one medication over a two week period, and we are also increasing another over an eight week period. I can tell you this is one of the most frustrating parts of seizure management. Change is slow because you can’t just pump up all the meds at once. In the meantime you are left watching your child continue to seize while knowing there is nothing more to be done than to wait and see if the monster takes the bait and goes back into its hibernating sleep.
As I write this it’s 2pm and Holden is sleeping. He slept in today until about 11 am and was awake for maybe 10-15 minutes before he had a seizure which put him into a posticatal state of sleep. He has not peed since bath time yesterday and I know I need to straight cath him but I haven’t yet. These are the little daily struggles of a parent like me; I’m concerned that he slept in late because it is unlike him and probably related to seizure activity that we can’t see, I’m heartbroken that he was barely awake before he had an ugly seizure that put him back to sleep, and I’m sad that realistically I need to go in there and put a tube in him to drain his bladder which probably isn’t something most people would appreciate when they’ve already had a crummy morning. It is difficult to enjoy your own day when these thoughts are what floods your every moment. All I can think about and wonder is how much more time will we have with him and what kind of quality of life will he have as we draw closer to the end. I know that these changes give us no clues, but my mom brain runs in over drive worrying about these things. I worry that he’ll have a strong seizure during the night and we’ll wake to him having passed. It’s really hard to not let these thoughts take complete control over you, but I do try my best to remind myself that our goal is to keep him comfortable and we are doing that every day when we shower him with love and cuddles. What is meant to happen will happen, and there’s no controlling that. It is what it is.
Attached are some videos of Holden’s seizure activity. I understand that it might be hard for some people to watch so viewer discretion advised.