The last post I wrote over a month ago was about Bennett starting to walk independently, which felt like a miracle!! I'm happy to report that his walking has only gotten more stable as time has gone on, which is even more of a miracle considering he had a seizure just 3 days after my last post. We were 1 week (to the day) shy of 6 months seizure free and I was really looking forward to celebrating that milestone, so this seizure was more difficult than most of the other ones for me. I felt gutted.
July 27, 2018. Bennett and I were lying in bed and he was watching Daniel Tiger (of course) on my phone while I was trying to catch a little more sleep before fully starting the day, when all of a sudden I heard choking noises and looked down to find him in a full-blown seizure--bloody drool dripping from his mouth onto my comforter. It lasted for a total of about 18 minutes start to finish, with a cluster of 4 generalized tonic-clonic seizures in there. I gave him the first dose of the emergency med (the one we had at home) right after the second seizure, but they didn't stop until the EMT's got there and gave him another dose. So in total I gave him 1.8 mg of nasal Versed, which didn't stop them, and about 10 minutes later the EMT's gave him another 1.5 mg, after which the seizures stopped within 30 seconds. He responded to the Versed great again--no respiratory issues and woke up fussy, but not having regressed at all.
He had been sick that week with a pretty nasty cold so I had actually been telling Dave earlier that I was worried he was going to have a seizure since this was pretty much the exact circumstances before his last one. He had just taken his first few independent steps, he had a cold (rhinovirus), and then he had a seizure after hitting his head. This time he had just started walking independently confidently, he had a cold (also the rhinovirus, as it turns out), and then had a seizure, but with no identifiable trigger.
I think this seizure was harder for me because I've had 6 more months of being engaged in the SCN8A community and coming to grips with the fact that sometimes seizures send our kids to the hospital for days or weeks at a time. Sometimes seizures cause sudden death. Sometimes seizures cause a complete loss of developmental skills. Sometimes seizures cause pneumonia. Sometimes the seizures can't be stopped without an induced coma. You get the picture. There's a lot more fear surrounding seizures now that I've watched 2 more of our young SCN8A kids pass away. And I was alone this time. I texted Dave and our nanny, Nicole, and they both headed over even though it was 8am in the morning (bless her!). Nicole got there first right after the paramedics arrived so she could help with Olivia, and since they let us transport Bennett to the hospital ourselves (quite a fight to refuse the ambulance...), Dave took him and I stayed for a few minutes to grab some things for the hospital before Nicole drove me over. (Our other car was in the shop that day, of course, which meant Dave was on Frontrunner when he got my text and had to Uber down back home.)
Thankfully, once Bennett had gotten some sleep and we were out of the hospital back home (couldn't get an IV in his veins after 4 attempts, including his head), he was acting like he hadn't even had a seizure! He was still walking, babbling, signing, etc. To say we were relieved is a massive understatement. I sort of live in constant fear that one day he'll have a seizure and wake up not knowing who we are or how to communicate with us. It's happened to some of the other kids and it terrifies me.
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