Max has been very confusing the past few days.
He definitely has not recovered well from his "bug" and we finally did have to resort to Prednisone last night. As of this weekend we had decided to hold off on the steroids, but now it's time. He is having labored, tight breathing and having a difficult time keeping his sats where they should be. Seems like we have been living on antiobiotics and steroids for the past three months and cold/flu season is supposed to be over! (But so is our isolation which could be the issue.)
But even before the steroids (which makes him a bit manic), he was acting pretty random. You would think you would be tired if you are getting up at 3 am (I know I am!) and not taking any naps....but nope, not Mighty Max. He will be super hyper one hour and then the next, he will look pretty crappy and sick.
This morning he was very inconsolable until I offered him his walker. We took it to the park and that provided a welcome interruption in his crankiness. :) Yay for Max's determination!
So anyway, we'll see how today goes. I am hoping the prednisone kicks in quickly because it has been a week of round the clock breathing treatments and little sleep. Hmmm...
* Beyond the short term issues, a concern of mine when Max displays these odd sleeping patterns is the long term possibilities. Many people with CHARGE have severe sleeping issues and require many medications. I am hoping this isn't going to be the case with Maxwell. I know it's minor compared to other issues, but it certainly impacts our quality of life. Sleep is pretty important to living a happy, healthy life...for both child and parent!