A rare, but very welcome smile from our sweet boy, who has very little to smile about. He is such a trooper!
We ended up putting him back on the Versed and constant EEG monitoring on Friday evening. As of today (Sunday), the EEG has shown no seizure activity. Big praise! The plan for now is to come off the Versed even more slowly, and they began reducing that concentration this morning. Our prayer is that the agitation and irritability will be minimal, and he will be comfortable and pain free. If we can get him off the Versed so he's more alert and eating and drinking better, they want to monitor him here for at least 4-5 days. The goal is to go home with the seizures managed on medications that won't make his liver worse, and await test results, so we know how to proceed.
As you can imagine, the waiting is the most difficult part of this process, so we continually pray for patience. We are doing our best to stay focused on the little goals and milestones he needs to achieve, and not dwell on the fear of the future. These are easy things to say, but not at all easy to accomplish. Each moment presents new worries, fears and anxiety about what we might be facing, and while I can't speak for Jeff, fighting off these thoughts has been very difficult for me.
Again, huge thanks to every one of you for your relentless prayers, words of encouragement, cards, notes, meals and love. We are so very thankful for you!