The title is from the Wizard of Oz when Dorothy & Co. are wondering who is behind the curtain. I have only seen the movie once with the actual dialogue many more times to Pink Floyd's Dark Side of the moon. I prefer the latter. Anyway, I had to comment that today has been quite the roller coaster. Let me explain.
I visited Jamie & Will this morning at the hospital, dropped off clothes and all the essentials. Will looked decent and had made some minor improvements from the previous night. Jamie shooed me off to work as I reluctantly read my blackberry and realized I had to deal with annoying customers all day! As you can imagine work was less than productive (I did buy some new books on EBay though). Halfway through my lunch appointment Jamie called to have a doctor try to get my consent for surgery. This was the first time I heard he may have Necrotizing Fasciitis, I had a basic idea what it might be (I translated it to "dead face" and wasn't too far off), she then proceeds to say they need to do surgery which may result in him not being able to raise his right arm, smile, feel the right side of his face, etc. Quite fun!
Fast forward to tonight. I feel like we are in an episode of "House". Every few hours it feels like the doctors change directions on what they think the cause is. They now believe there is no Necrotizing Fasciitis (which is good) but they still don't know what the problem is (which could be worse). The CT scan revealed evidence that it was not Necrotizing Fasciitis but also didn't tell them much else except he was making improvements. Now I realize that there is not much a doctor can do under these circumstances. The update stats show late onset GBS has a 0.77% chance of occurring and recurrence is even more incredibly rare meaning there isn't a lot of data to draw upon for this. So we sit and wait. He does have GBS but we don't know why it keeps coming back and that is their concern. No one wants to try surgery yet as it isn't "necessary" but may be to find what is the underlying cause.
5 years ago
9 comments:
Hey there guys, I am so sorry to hear all this about your little guy. I hope that all is going well and he will start getting better. He sure is cute though! We will keep you in our prayers.
So glad that it isn't the NF. Hope that he continues to do well, we are already missing him like crazy!
Jamie, you guys are awesome, Hang in there! I knw whta it is like watching your sweet helpless child struggle through illness, it breaks your heart. But Will is a strong little dude, Things are going to work out fine. Youand your fam are in my prayers tonight and every night. keep us posted. love you Jamie. Your doin great, heaven is watching out for ya
So, did you know that House also played one of the villans in 101 Dalmations. I found that comical, almost as comical as the hunk of meat on a plastic fork.
Jamie I have not checked your blog in a while and... oh man! I hope everything is going ok, Will and you and your hubby will for sure be in our prayers. I wish I was closer so I could give you a BIG hug, its the hardest thing to watch your babies go through things like this. You guys are strong and so is little Will! Hang in there:)
I find myself constantly checking your blog to get updates. I hope things are going well. We are thinking about you and your family.
Very glad to hear it's not NF. I hope that the doctors will be able to find out what's going on. We love you guys and you are all in our prayers:)
We are hoping that Will is improving. Our Prayers are wit you.
Sorry to hear about Will. We are thinking about you always. He is a tough little guy he always pulls through.
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