"Storm" Info

I did some research this evening regarding these "storms" that Aidan is having. Dr. Caceras has called the condition "Autonomic Dysfunction Syndrome." This is just one of several terms. Another name for it is Paroxysmal Autonomic Instabilitly with Dystonia (PAID) Syndrome. It's basically characterized by elevated temperature, elevated blood pressure, elevated heart rate, agitation, and posturing (rigid muscles).

There are several drugs that they can use to treat this and Aidan is currently on a combination of them. There is no set therapy and we just have to see how he reacts to what he is on. This syndrome could go away in a few weeks to months to even a year or so. We are praying that it goes away soon. The literature I found is mostly in medical journals and is very difficult to read so I'll save you the headache of having to read it.

From what I've read and from what I saw on his last MRI it looks as though there may actually be some amount of "damage" or decreased oxygenation to the mid-brain area which is the part of the brain that controls the heart rate, blood pressure, etc.

As far as long term, I'm not sure how this is going to affect Aidan's recovery. I'm praying for the best though. He is only 2 and his brain still has a lot of growing to do.

I can't even begin to tell you how much I miss him. It is so hard to go into the boys' room and see his empty bed and know that it could be up to 6 months or longer until he is able to sleep in it again. I want so badly to hold him and hear him say "hey" or even hear him cry. I won't be able to do that until they take the trach out. I miss his hugs and his kisses and being exhausted from telling him to get out of stuff he's not supposed to be into.

This is the hardest thing I've ever had to endure and I don't think I'd wish it on my worst enemy. I think right now the unknown is what is making this difficult for me. That and just the sheer amount of time that this is going to take.