I apologize for not updating sooner but we are having some DSL issues at the moment. The good news is we are home. The scary news is we are home.
Ben is not acting “normal” and really hasn’t been since we left the PICU. He’s very, very lethargic – almost comatose. There have been two episodes where he’s stopped breathing. The one that occurred early this morning lasted just a few seconds and he was able to correct on his own. The one that happened yesterday afternoon lasted about a minute and took about 15 seconds of bagging to get him to breath again. Neither one seemed to be triggered by a seizure.
We have two theories. He might be completely exhausted from the weekend and just needs the rest. The increased the dosage of his Kepra can cause lethargy until Ben’s system gets used to it. Of course it could be a combination of both or something else we really don’t want to think about at the moment. Whatever the reason we just know he’s not out of the woods yet.
Poor Jessie really didn’t want to go back to school this morning. I know she felt like she didn’t have much of a holiday break. That’s just another part of the painful side of having a special sibling. Their brothers and sisters lose so much of their youthful innocence. They learn how unfair life really is at an age too young. I just wish we could do something special for the best big sister in the world.
That’s all I got right now. As Vickie and I were lamenting just a few minutes ago, we’re not exactly back to square one but we’ve returned to "en garde living." Ambu bags are back in rooms that haven’t had one in years. Joan has meticulously updated Ben’s historical data. She’s printed out numerous copies to distribute to doctors, nurses, specialists, or anyone else that might need the information should we have to leave again in a moment’s notice. Over the next few days we’ll be brushing up on our CPR skills.
I wouldn’t say we had become lazy but we certainly were more relaxed as a family when we started our day Friday morning.
Monday, December 01, 2008