Wednesday, May 8, 2013

Meeting P.J's New Neurosurgeon

The last couple of days have been busy for us with Pauly. We had his Bailey test yesterday and today we got the results of his test and met his neurosurgeon.

P.J was not into the testing...AT fact he got extremely upset and frustrated towards the end. At first he was pretty mellow and compliant but eventually enough was enough for him. We found out today that he is more delayed then we thought. He is roughly between a 12-16 month old level (averaging out his scores). We truly don't see him being that far behind when he is at home....we know he isn't where he should be but we had no idea he would rank so far behind. That's okay though, things can only get better, right? :)

His neurosurgeon seemed to be a wonderful, intelligent, compassionate gentleman. We were relieved to see that Pauly also approved of him, P.J does not try to interact with people if he doesn't "click" with him and P.J was more then willing to reach for things he had and listen to him.  We were told that they were not going to bother with the IEEG this time (brain graphing) as he could obviously see the remainder of the right front lobe was an issue. We are looking at only a 50% chance of him being seizure free. If they return they will schedule him for brain graphing and remove further back and if need be will consider a hemispherectomy. At this point his surgeon does not want to remove too much in one surgery anyway. We are already treading on dangerous ground where the dysplasia is. There is a chance of a shunt being permanently placed since one of the areas being removed is near a fluid pocket. The surgery could be next week or the week after....we should be finding out tomorrow. We were told it will be a seven hour procedure and be about a four day hospital stay, maybe longer depending on how much of an impact the surgery takes on his motor functions. The appointment was really a lot to take in and I feel like I should have recorded it just in case I missed something. I got the just of it though and although my wording isn't near as "medically smart sounding" as he put it that was the basics of what I gathered from our time with him. We are hoping things fall in the seizure free 50% for P.J but if it doesn't, that's just fine. Pauly is such a strong little soul and he will power through this---We all will make it through this!

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