Monday, May 31, 2010

Home again...

We got out of the hospital on Saturday night. After a pretty tense day in the hospital. Max was doing better, but we were having some disagreements with the treatments that the doctors on call wanted him to start. We had to advocate for Max, yet again.

I remember once a parent saying how, sometimes they'll take the occasional hospital stay, because it is a break for them. I have never understood that way of thinking! We are always on edge and on our toes in the hospital. There are people coming in all day long, making decisions for our incredibly rare child, who have never met him...or us...or have even heard of his disorder.

So every decision, to us, is a suggestion. We still have the final say. So it's definitely no break!

We finally got him home, and he had a good night, and woke up happy Sunday. All day he was talking non-stop! Making new sounds, and trying new words out. We always see an increase in his cognition after these episodes, but this was the most we have seen!

Mid-afternoon though, he had a couple of very very short seizures. We got them on video, because they were so different for him. He would be talking or singing, and then just stop, stare out the window, and jerk for 10-15 seconds. Then he would start up talking again, like he didn't do anything.

We had to call his doctor, and tell him about it though, since we were so fresh out of the hospital. We were sure hoping we couldn't have to go back! He told us to give him the emergency medicine, and call him back later.

Let me just say here, I always feel so bad calling our doctors at home when they aren't on call! I know how hard he works, and when he's not on call, and actually has taken a rare holiday weekend, the last thing I want to do is bother him. But, I was given very clear orders to I did...and of course he was more than helpful...but I still felt bad.

We gave Max the medicine, and the cycle stopped. We may be onto something here! It didn't knock him out...just enough to break the seizure cycle.

He had a beautiful sleep last night! Sleep does his brain a heap of we're happy when he's had a full night of sleep!! Hoping it means he'll feel like going out of the house today...even just for a walk or out to the yard.

It's funny how expectations change. We're hoping that Max at LEAST wants to leave the house today. Not planning a trip to the park, or to the mountains, or out of town, or out of the country. Just hoping he wants to go outside of the house. Sometimes that's hard to accept. But, we have our boy, and he is healthy, and recovering from the hospital we'll take outside if that's what he wants to do.

Hope everyone has a good holiday today. We have an extremely busy week ahead. We are having to follow-up with all his docs, and see what else we may have to change around. But today, we will relax.


Thia said...

Your post reminded me that there is so much we don't understand about the human brain! I am glad that the cycles have stopped and hope that you guys have a nice, peaceful day be it inside or out.

Junior said...

So glad to hear you are home from the hospital. We will be praying that the seizures slow down for Max and he will get plenty of rest and want to go outside.
We can sure understand just wanting him to be up to going outside. I was thrilled yesterday afternoon when Junior and I could just sit on the porch.