I knew something was brewing when Alex was so sleepy on Christmas day. On Monday she was really tired and on Tuesday she started coughing a really wet cough and was running a 103.5 temperature. We took her to the doctor on Wednesday and they ran a strep test which was negative and just said she caught something viral. She's been so pitiful the last few days and it was quite concerning to me that she's been sleeping almost 19 hours a day, but I guess her body needs it. Even on Motrin and Tylenol she was still running a 101 temp and she has refused to eat anything by mouth...one HUGE benefit to having a feeding tube! She's been on breathing treatments around the clock since Wednesday and I think things are starting to break up. We had to pull her old suction machine and oxygen tank out and it's been a loooooooong time since we've needed any of that, which was a really great reminder of just how far she's come. It's actually been so long that I didn't have all of the supplies I needed so I had to call my friend Christy and asked her to 'borrow' some suction tubing - one of the many great benefits of having friends with special needs kids! :)
My other concern was that I had called her neurologist yesterday to get the results of her blood levels from her draw last week since she's now on higher doses of her seizure meds. The normal blood range for her medicine is between 50-100. We took her for her blood draw right before her afternoon dose so that she would be at her trough level (the lowest level that a medicine is present in the body). I was pretty alarmed when they told me that her levels were 117. I started panicking that if that was the lowest level in her body that meant when she was at her peak, the numbers were obviously going to be much higher. I started googleing toxic effects of the medicine because of the way it metabolizes through the liver and the number one thing was being lethargic. So is she lethargic because she's sick, or because she's toxic?!? Ughh! Her neurologist called me last night and assured me it was fine that her levels were higher than the 'standard', especially since the medicine is obviously working because she hasn't had a seizure since we've increased her medicine (KNOCK ON WOOD!!). He said our first priority was to get her over her illness and then for me to call him if she still seemed lethargic or we had any other concerns - so I feel 'slightly' comforted that he wasn't alarmed about her numbers and the fact that she's seemed to have perked up as of this morning. I'm praying she's turned the corner today so that we can enjoy the holiday weekend and start 2012 off on the right foot!
One more thing....(Of course I can't have one blog post without a picture :P)
Santa had brought Alex a really cool pink fuzzy chair for Christmas....it's such a comfortable chair (I want one!)...she loves the way it feels and likes to move her feet back and forth on when she's in it. We took this picture of her Monday morning and I just love it - she looks so 'typical'.