Wednesday, December 28, 2011

we are going home!!! :)

Ben slept heavily last night.  He woke up this morning and ate breakfast!  :)  He sat up independently, was talking more, aware of his surroundings a bit more, etc.  We even took him to another part of the hospital to watch some drummers perform (he had his beloved drum sticks with him). 

We met with the doctor just a few minutes ago.  His depakote level dropped again, this time it's below the therapeutic level.  The doctor thinks that maybe the clonazapam is interacting with this med.  Its hard to understand because we've been on this combo before without difficulty.  But we are going to slowly trade clonazapam for transene.  We will also increase his bedtime dose of depakote.

He just had another 20 second tonic clonic seizure while he was sleeping (nocturnal).  :(

But we are going home!  We will give him his meds at 3:00 and then be discharged sometime after that.  It's always with mixed feelings that we leave the hospital.  We are always thrilled to go home, but in my mind I always hope that he'd be completely better.  I mean, we come to the hospital so they can fix him; make everything better.  But we are going home with the same issue, it's just a little more controlled.  We have to keep looking at the small victories.

Here's what some of those victories are:
1.  He ate breakfast and was willing to drink fluids.
2.  All of his seizures are milder in intensity, duration, and frequency.
3.  Those mysterious seizures may NOT be tonic afterall. (oh, I hope so!)  The doctor observed a milder one and he thought it looked more like a generalized type seizure, I'm not exactly sure what that means, but it's good!
4.  He has maintained ketosis since we started the diet.
5.  The nurses have been amazing for us. 
6.  Ben is able to rest without constant seizing.
7.  He is able to hold his body up while seated and can walk with assistance - he'll be back up and running in no time - we just need the high powered meds to clear his system and for him to get used to the increased depakote and adjust to the transene.
8.  We are going HOME!!!  Things always look better at home.  :)

Thank you for reading and for praying.  We keep hearing from and about people who are supporting us - some of them we don't even know.  Thank you for your love and concern.

1 comment:

  1. YAY for going home! Yay for good news! Yay for Ben feeling more like himself!

    Praying for you and holding up your arms like Aaron and Hur did for Moses.

    Love you and have asked many to pray for you--I know they are. We are too.

    Love you!

    Amy Jensen