Not out of the woods yet

Going to be last night, I thought "he's doing so much better".  I woke up this morning and saw that he wasn't. Alexander woke up this morning and appear to be having a seizure. However, it wasn't like his seizure on Friday and instead it just looked like he was sleeping with his eyes open. Once he  got out of bed, he didn't want to extend his right arm or open his hand. He kept it turned in and closed. This all started to worry me and as the morning went on, his hand continued to relax and stiffen and he continued to have a few staring spells. So I requested for Neurology to come look at him and Neurology requested that we set up a video EEG that would monitor him for 24 hours. This means keeping Alexander in his bed or in my lap for most of the day.  Well he didn't like that and neither did I but we made the best of it.

This afternoon he woke up from his nap, had a lunch and then got grumpy. About an hour later, I was holding Alexander and he began to have another seizure. It wasn't as intense as the seizure on Friday but lasted for almost 10 minutes. It happened in front of his nurse who then proceeded to leave the room telling me "I'll be right back"! I FREAKED OUT! I began crying hysterically because there I was reliving the horrible nightmare and our nurse just left me. She came back quickly with a few doctors who kept reassuring me it would be okay and that they were ready to give Alexander medication if it was to last longer than 5 minutes. So we watched him seize because there really isn't much you can do.-SCARY! I hate, hate, hate, hate this!!! He just can not catch a break for longer than 2 months. Something always has to happen!!

So now what? Good questions! I don't know. We wait I suppose and see what the cardiology and neurology teams say. Alexander's pacemaker was not interrogated today as it isn't as important as the EEG and he's here in the hospital, so if something comes up, we will know. I'm praying we get some information about his seizures, that Alexander continues to NOT have ANY setback from these episodes and that questions that are answered, are the news we want to hear. It's an emotional time right now as we just don't know what tomorrow will look like and can only hope that questions get answered and plans get made. Keep those prayers and positive thoughts coming, Alexander needs them more than ever again! <3