Breakthrough Seizures

    So much updating to do! I've been feeling so incredibly blessed lately. I know I've always been blessed, but to actually feel Heavenly Father's love for me is helping my testimony grow. Anyway, I thought I'd throw that in there. On to events!

     Oh, wait, we haven't done anything too exciting. But there have been a few non-exciting events.

    See this sleepy guy? Yeah, talk about a bad end of the week for him a couple of weeks ago! Thursday, we had just come inside from our walk. I lifted up the hood of his car seat just in time to see his eyes roll back and his body tense up. I knew what it was- but my heart still began to pound. I calmly talked to myself to remind myself he was just having a seizure and he was going to be okay. I gently unstrapped him and held him while it happened. I then called his neurologist to give her an update and shot a text to Gary. It took ages for his doctor to get back to me. A few hours later, he had another one. Then another two hours later. Frustrated, I continued to call the neurology department and told them to flag the call as urgent. Finally, his doctor called back.

     She told us to double his Keppra dosage- and since it can take several hours for that to take effect, that she would write us a quick prescription of Lorazepam- basically a drug that would calm his body down (think anti-anxiety and panic attacks). She warned us it would make him drowsy- which, as you can see, did. Because of how strong Lorazepam is, we were instructed to only give him one dose every 8 hours- 2 doses max. If after the second dose the seizures continued, it would be a trip to emergency room.

     Not only did the drug basically sedate him, it made him weird and completely off. When he wasn't asleep, he was hyperactive- but not the playful, smiling hyperactive. He would rarely make eye contact and socialize. Instead, he would wriggle his body and let out these ear-shattering screeches, like he was desperately trying to avoid sleep. It hurt our ears, but it really upset me to see him this way.  I'm telling you, it was really odd behavior. 

      The next morning after his second dose, he had another seizure. So, emergency room we went. The doctor had to call his neurologist, who instructed him to give him Phenobarbital through an IV to control the seizures. It seriously took an hour or more to get the IV in him. They poked him everywhere, but it kept bursting. They even had to call in nurses from the NICU. One nurse finally got it, but minutes later it burst again. The only place left was his head- until a male nurse who happened to walk by found a place in his ankle and stuck him- and it stayed. I was mad and frustrated it took them that long (though I remained calm and patient- no need to add stressed mommy to the list of Alex's bad day). Not to mention he was screaming bloody murder the whole time, causing nurses and patients from other rooms to go in the hall and see what was going on. I had to nurse him to calm him down. Plus, he had two seizures in the process. 

During the Pheno IV

Attempting to burp him after a feed. Too sleepy!

     However, the Phenobarbital did the trick. It pumped in his system while I held him for about 90 minutes. He was still off for a couple of days after, but with his increased dosage of Keppra, he's been stable now. Never again do I want to do that. We are considering a new neurologist, as we want to make sure this doesn't happen every time he needs an increase in dosage. 

   Anyway, so far so good as he's been seizure free! And he's back to his normal, silly self.