SUNDAY NIGHT UPDATE

It seems like the new seizure medication is working! We have seen no more of Jacob's long complex partial seizures since he started on this drug late Friday. That is amazing honestly! With that result in my hand, I wish we would have moved to this step quicker. Jacob being on more seizure medications than there are fingers on a hand, adding yet a medication is typically not what we want to do, but it's working.
This is a fairly new medication to be used in kids, so there are not a lot of side effects documented. We do see some though. Jacob has SO much secretions. We have to suction more than we would like to, but we see a slight improvement today over yesterday. Jacob is also pretty sensitive to touch, and rolls up in a little ball, if we move him around or make quick moves. Lastly, and the one side effect we are the most concerned about, is Jacob's alertness and responsiveness. He is pretty drugged up now with all the medication increases over the last couple of weeks + this new drug. He is not sleeping more, just pretty out of it.
I can't say that I think we're in a safe seizure free place yet. We now need to start working on decreasing some of the meds we drastically increased over the last 2 weeks, so we can find a place where Jacob is as interactive as he possibly can be with all the drugs he is dependent on. It's not a straight forward plan of removing or decreasing one med over night. I know this can take weeks or maybe even months, and at the same time, we need to make sure that Jacob doesn't start to have more seizures again.
I feel that we're a bit in the unknown right now. Not really sure where the path will take us, but it's also familiar path, one we have walked before, so I am hoping with our neurologist being so involved that we can take one step at a time, and slowly see improvements, and getting Jacob out of his fog without seizures!
I also got news from Joakim that Sarah is sick. She has a high fever tonight and a wheezing cough. I was pretty sure we would go home tomorrow with Jacob, but I am now debating if that's the best with a sick kiddo at home. At the same time, Sarah needs mommy too right now.
I am sort of happy it's Sunday night. I am ready for a new week, even if I have no idea where the week will take us. Time will tell as always.
We feel the support every step of the way.
Thanks everyone, Maria.