Afternoon Update

We don't even know where to start with this entry. Aidan had several storms overnight that weren't too bad. Mainly just the rigid posture/stiffening up. This morning when Erin got to the hospital he was having another storm. They are having a hard time getting the vent tubing to stay on the trach tube and it pops off continually.

Dr. Caceras came back on duty today so everything is being changed up again. They are switching most of Aidan's meds from IV form to oral form so that they can be given to him through his G-tube. That is a step in the rehab direction. Dr. Caceras doesn't want to give Aidan the morphine to help calm these episodes. He wants the nurses to give him Ativan and then Fentanyl and then if those aren't effective (which they usually aren't), then they can try the morphine or propofal(sp?). Right now, the morphine is working to calm him down.

It's a lot to try to keep up with, and frankly, we're getting frustrated with it all. Either Aidan is completely drugged up to keep him from having the storms or he is more alert and constantly has them. He can sometimes calm himself, but for the most part he only calms down for maybe 5-10 minutes, sometimes it's less than a minute before he's back into it.

If they were able to get them under control to the point that Aidan is only having one or two episodes a day, we can deal with those. He could go to rehab and they can work with him. But to constantly have these things unless he's just completely out of it ... we don't see how they are going to do anything with him in rehab.

We just don't understand it all. We're praying for these storms to just go away completely so we can move on to the next stage. We think the best thing for all of us to realize is that Aidan is not going to just jump back from this. It's going to take time, a lot of it, and he may never be like he was before the accident. But then again, he can surprise us all and come back completely. That is what we're hoping and praying for. We miss our little boy.