If it's Not One Thing It's Another

We had a very eventful weekend. It started Friday when I had just gotten Chris to sleep and laid him down to change his pants because I noticed he had just filled them again. I also noticed that he was retracting significantly...which is a sign of difficulty breathing. His lungs sounded good for once and he wasn't running a fever so I was baffled. I recorded it on my phone and texted it to a couple different people and Dr. L and asked if this was of great concern...well duh. But I wanted to just get through the night and we did.

I expected though to be going to the doctor the next day and for him to sound like crud, but he didn't ironically enough. We had 3 seizures on Saturday, but other than that, a great day. One he went to bed though...you got it...bad breathing again. He did okay through the night though.

Sunday, we were very fussy. He slept most of the day, being awake only 7 hours throughout the day. He also had 4 seizures, including 3 last night in 2 hours to end up in a 45 post ictal state. I took a photo of him in that state and it didn't even look like him. It looked as if he was only a shell. The glimmer in his eyes was gone and his little smile that is always on his face was gone. He was just staring blankly. A couple friends agreed it looked like he wasn't "home" either.

Once the post ictal state was up, the breathing issue started again, but his time with periods of apnea. Again though...this morning, he was up and fine. I took him to see Dr. L though today to get on the top of this. His lungs still sounded clear, but he was still having issues. He looked at his tonsils and said they were touching his uvula and was surprised that he could swallow anything. So basically, when he's sleeping they are shutting off his airway.

We are on another antibiotic...5th one in 10 weeks. We are still waiting to hear form Omaha as to whether or not a feeding tube will be placed. Last night he was in the bath tub and was splashing and giggling so much that he swallowed the water and of course...aspirated. Jen had always said that parents had complained of them having issues in the tub and I was like...whatever...but we found out first hand.

He's fine today as far as lungs go....but the viscious cycle continues. We just needs answers...and hopefully soon.