For those who are sick of the updates...BE WARNED AND DO NOT READ . I get it, sometimes TMI is just that TMI. For us, this is the easiest way to update alot of people quickly. Ok, here is what do have been told. His LP shows a WBC count of 54 which they consider high for someone even on steroids. His MRI shows swelling and inflammation all over the brain which is likely what has impacted his speech and/or behavior. We believe his motor skills are at least intact and that he is comprehending more. Last night after sedation he couldnt speak other than to scream repeatedly until pain/adavan meds kicked in. This morning wasnt much better but a few minutes ago we helped him walk to the bathroom, he didnt want to lay back down, asked for a tissue and said he was thirsty, then flailed at me when I brought the wrong item. His speech is far from perfect but at least he was able to talk a little and wiped his own tears and said when are we going home and we understood that clearly. We are not out of the woods. There are several labs still out. At this point it can be an MS flare, an infection like meningitis/encephalitis or other infection or a combination of both. For safety sake while they try and test they are treating with steroids and antibiotics. Evan still has not had anything to eat since Sunday morning. Hopefully he will eat sometime today as putting him on IV nutrition is not a good thing. We are holding up thanks to all the support we are receiving but as you all know, we wont lie, its hell. I miss Evans personality, I miss Ethan and the damn donkey dog. I even miss work. I want normal problems. Im also going to put a big shout out to our neurologist at Lucille Packard. He has been right here, even on his day off, before rounds, and apparently reading up and looking at sources of this problem on his day off. He stopped by again this morning to check on us and Evan. He even got teary eyed. Its basically one day at a time. We arent even sure when we may be able to go home. They want to be sure the swelling is under control. One of the doctors on rounds this morning was a resident ?? (dont know the proper term), now is is a permanent or whatever they call it dr. On the team today. He said he remembered Evan and everything about his initial stay 4 years ago. Kevin and I both remembered him too. I suppose Im finding some solace in knowing that the decision to come to Lucille Packard instead of UCSF was better. Not saying UCSF is bad. This is just more comfortable, we know them and we have a great advocate in Dr. Van Haren. I cant thank you enough for the prayers. Keeping in touch has kept me relatively sane and that is saying something. To those who have stepped in to help us, I really cant thank you enough. Its not over but I believe we are on the right track.
Posted on: Tue, 20 Jan 2015 18:47:19 +0000
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