Just when it seemed we are all clear of medical emergencies for the year, I received a call from the school nurse saying that Luki was transported to the hospital emergency room after gashing his face from a seizure fall. We are fortunate that the hospital is right behind his school campus and he was promptly taken by the paramedics via a gurney to the ER department. His teacher said he fell from being seated to the ground after a drop attack. His 1:1 aide was on her lunch break so he was being supervised by another classroom aide who was clueless about the nature of how quickly and dangerous the seizures can be. His teacher said the guy was pretty shaken up afterwards and I feel very bad for him because this has also happened to me even with being very vigilant.
I found Luki sleeping, post ictal, on a gurney in the ER hallway with blood stains all over his shirt, shorts and shoes and found dried blood streaking down his face. The above picture to the left is taken after I cleaned him up. It was like watching a scene from a horror show. The paramedics and the school principal accompanied him as they waited for my arrival. A very young resident explained she would do the sutures but seemed nervous as Luki would not sit still and would use his hands to resist her or attempt to snatch her tools out of her hands. I swaddled him up with a sheet but at 15, he is much stronger than when these incidents happened at younger years when it was so much easier to restrain him. I suggested a little bit of ketamine to knock him out as this was done in another ER visit to get sutured for another wound. She put the orders, I signed all the consents and liability agreements, the respiratory technician was called to bedside and the resident doctor was able to suture his wound in 15 minutes just in time for the medication to wear off and for him to gain back consciousness. I sighed a breath of relief, and the doctor gave me a nervous laugh as if I were echoing her same sentiment. I remember we went through a similar ordeal for him on the other eyebrow for which he didn't receive any sutures and now half his eyebrow permanently grows no hair. We waited for the ketamine to wear off, monitored him for any signs of vomiting which could be from the sedation or a brain bleed from the fall. Once cleared, I took him home with him being back to his cheerful good mood.
As a parent, it can be quite lonely to be going through something like this but wouldn't you believe it this webinar (see below) came to me exactly when I needed some reassurance that I am not failing my son by not having his seizures completely under control. It is also comforting to belong to a community of parents who get what I am going through. These moms speak my language, echo my sentiments regarding seizures, antiseizure medications and quality of life. The most helpful advice these moms shared is to not be so hard on ourselves when our kids' seizures are not under control because sometimes, I feel like I am failing him when these emergent situations arise.
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While living in the unknown and the mystery this syndrome presents and when no cure or proper treatment is in sight, it is so good to find a community who can sit with me in the uncertainty this life presents. Their presence makes all the difference.
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