Thursday, January 19, 2012

Rapid undulation

The 2 days since Will's sinus surgery have been full of ups and downs. Not high highs and low lows... just small rapid changes.

The night before Will's surgery, he slept terribly. Even by Will standards. He woke up about 8 times in an 8 hour period. This was after sleeping terribly for the better part of the week before as well. Even though we're well versed in truncated sleep around here, this was getting a bit unbearable. Thankfully the night after Will's surgery, he slept much better. I wouldn't call it GOOD... but it was at least back to normal. He woke 4 times that night.

The day after the surgery, we noticed one single remarkable instantaneous change in Will. His face no longer smelled. This might seem like an odd statement. But for the last couple of years, Will has had bad breath. Even after brushing his teeth, he would still smell stale. It kind of overwhelmed his face when you would get close. We never really talked about it before (even in a 4 year old, bad breath is taboo!), but both noticed the change and remarked upon it. Instead of smelling Will's breath, we could tell what he had eaten recently (strawberry yogurt). So odd.

I had high hopes that the second night after surgery, Will would sleep even better than the night before. I like trends like that :) Unfortunately, Will had other ideas. He woke up in clusters, wanting to be adjusted on his bed. The packing in his nose is starting to break down, and he sounds congested (even though we know he isn't, and couldn't be). We were sleeping terribly, and sleeping hard in between Will wakings. At some point in the night, Luke had a bad dream and came into our room. Usually I wake instantly when I hear Luke walking at night, but I didn't notice him until he was in our bed, practically sitting on Nate's face, and sobbing. Nate was so tired that I literally had to wake him up... with Luke still sitting on him.

Will had a good day today. We decided to see how he would do without Tylenol, and he did wonderfully. He had a great eating day, and his thirst for Pediasure is on the rise.

He took a long time going to sleep tonight. So happy in his bed, kicking around and smiling. After a while, I didn't hear him anymore, and was preparing to hit the blog to post about how well he was doing. I checked one last time. You know where this is going...


So the rapid ups and downs, the undulations... well they have ended on a low point this evening. Will responded quickly and completely to his Diastat, and is back to sleep. He is peaceful. I am upset. I had allowed myself to hope that this surgery and the infection that made it a necessity was somehow having an impact on his seizure frequency. Get rid of the infection, get rid of the seizures. Wouldn't that be awesome!?

I don't usually do this. I am usually very tentative, practical, and realistic about our life. But for some reason with this one, I got ahead of myself and didn't tap the brakes. Slow down. Realize that this sinus issue could be and probably is totally unrelated to Will's increased seizure activity. Just an unfortunate coincidence.

Tomorrow will likely be better than today. Over the next week, Will will continue to heal from his surgery, and by Tuesday, he should be breathing and clear like the day he was released from the NICU (I can't say like the day he was born!) This will be an improvement for Will, and will likely dramatically improve his health and happiness. But it is unlikely to change our next couple months of action... Johns Hopkins in early March for the epilepsy surgery consult.

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