A horrible rollar coaster in my never ending nightmare

Some of you have heard some or part of the news and for others this may be new. But I wanted to pass along a health update of what has transpired over the last week - and my subject line says it all!

Last Wednesday, I met with my surgeon and he decided to move forward with my surgery to move the part of my skull from my stomach back to where it belongs.I had an infection on my scar and he  said it would be easier to go ahead and fix the skull while he fixed the infection. I was a little excited but overwhelmed that things were happening so quickly.

Then all things changed. I woke up on Friday morning with a horrible, horrible headache (and for a brief time I wasn't responding correctly (I could think of the answers, but they weren't coming out of my mouth.) Thinking that I could be having another stroke, I was rushed to the ER where I hung out in almost all day. I had tons of fevers, topping out at 103. My surgeon decided to admitted me and move forward with the surgery as soon as he could (I needed to come off the blood thiner in order to have the surgery so the date was set to Wednesday). While in the ER I went through tons of tests including a MRI, MRV and a spinal tap.

On Saturday morning, it looked like things were moving fine toward the surgery, but then someone from infections disease came by my room. Apparently they took a culture of the infection on my head and discovered that it had developed into a staph infection - what type they didn't know, but they put me on strong meds and put me in solitary confinement. Whoever came into my room had to wear a gown and gloves. On Sunday they found out it wasn't the bad staph infection like mersha, which was the good news, but decided to post-pone my surgery for a couple weeks. I was super upset but though I still had good relationship with my surgeon and he'd still move forward (he was out of town all weekend). 

On Monday I met with him that afternoon and he said it was my decision but he'd be willing to move forward with the surgery. He'd clean up the part that had the staph infection - which turned out to be superficial, then move forward with the surgery, or I could chose to wait. I liked the idea of moving forward - I'm reading to have this all behind me.

But today has been hell!!! Apparently my neurologist and infections disease doctors went ahead and moved forward with a plan to focus on the infection for another 2 weeks, then start considering the surgery. Their actions basically tied the hands of my surgeon - he basically lost the lead in my treatment. He could move forward but it could put his career in jeopardy. I could tell he wasn't happy when he came in my room, and he know he'd be upset. But he did promise that he wasn't leaving me and he would be the one to do my surgery. A few hours later I met with my neurologist. He said he felt the need to come and personally explain why they changed things cause he knew I would be upset and not agree.

So it looks like I might be going home on Wednesday - which I so ready to get out of this place as I'm going a lil crazy.  But it's also frustrating knowing that I'll have to come back another time to get everything complete. Will this nightmare ever end?

As as I said in my subject line - these last few days has been a horrible rollar coaster. Just a few as I got excited about the good things ahead, everything would fall down and I had another huge hill to climb. I have cried more tears these last for days than I can remember. Tears are rolling down my face as I write this e-mail. I'm past putting on a happy face - I just don't have the energy to do that.

And I'm sorry if I haven't responded to your text, phone call or e-mail. Part of me doesn't know what to say, and in many cases I don't know what to say. I feel disappointed, I feel let down and I feel defeated. 

And as I told my parents, I also don't know how to pray right now. Besides screaming out - God why? - nothing else seems to sum up my thoughts and emotions. I'm thankful that I have dozens of friends and family standing in the game for me, serving as intercessory prayer warriors for me. But this has been a huge trial of my faith. Just when I think things are getting better, I feel slammed back to the group. Hopefully one day, probably years from now, this will make sense. But right now it is just a nightmare.

I'm sorry if this is the first time you are hearing this news, but thank you for your continued support.