Patience

The past few days have not gone exactly according to plan.  After Will was sedated on Thursday, he had a hard time recovering.  We think it was mostly because he hadn't had anything to eat or drink for so long, and his little body really got shocked from it.  Somehow in all of this, he picked up some sort of a virus, which has now put his treatment on hold once again.  We are packing up and getting ready to go home today, but we have not started ACTH, and we will likely be back at the hospital again in a about a week.

Will mostly cuddled and whimpered all day Friday, and just wasn't himself.  He was also very shaky, so much that he was unable to stand up, although the IV in his foot wasn't helping matters.  He was a generally unhappy little boy, nothing like the smiley little Buster Beans we are used to.  The doctors decided to postpone starting ACTH until Saturday, so we waited.  They did discuss the results of the PET scan with us, which basically confirmed the malformation that had been found on the MRI.  This was somewhat of a relief, as it means that he is still a candidate for surgery, and they didn't find anything unexpected.  The Dr. described the malformation as a "fuzzy spot" without clearly defined edges, making it difficult to know exactly where it starts and stops.  We don't know what this means in terms of how much of his brain might eventually have to be removed, as a lot of additional testing will have to be done by that time.

We got a visit yesterday from a woman who is a chaplain here at the Clinic.  She was blind and had a seeing eye dog with her, and thank God it was a black lab - our dog at home, Duke, is a black lab, and Will adores him.  When she came in, Dan was sitting on the floor with Will trying to get him to play with his toys, comfort him, get him to sleep, ANYTHING to get him happy.  The Lab came over and laid down next to Will on the floor.  Will must have felt like he was at home with Duke because he touched the dog's back a few times, grabbed a few handfuls of fur, then curled up on Dan's lap and was asleep within 5 minutes. The chaplain then sat and talked with us for about 20 minutes and she was great, very friendly and comforting.  She closed with a small prayer for us.  What a great visit!  We hope to see her and her dog next time we are here.

Dan's parents came down Friday night and brought dinner.  Will finally perked up while they were here and put down a lot of food, and we felt relieved that he was getting back to normal.  However, shortly after they left, he threw up everything he had eaten, and became miserable again.  He finally went to sleep after midnight.  At this point, we knew that beginning ACTH was not an option, and the doctors confirmed this during rounds this morning.

So, we are going home today.  As much as Dan and I love each other and our little Buster, we can't wait to not be in a 12x12 room tripping over each other, and we can't wait to see Jack.  We are just feeling completely exhausted and somewhat defeated.  Regardless, as much as we want to get on with this, the time is not right, and for some reason we aren't meant to start ACTH right now.  They are going to use this opportunity to try another drug, Keppra, in addition to the Topamax.  Keppra is administered orally in a liquid form, so it's an easy one to give him, and has relatively few side effects.  Right now, we are praying for patience, and for health for our little Buster so that we will be able to continue his treatment  soon.