Dude. That was not fun...at all.

So, at the time I wrote my last post, we were feeling optimistic, excited to have a new diagnosis, and hopeful that Dad would start making more progress.

Then, things went down hill. Wednesday afternoon Dad started feeling really sleepy. The doctors ran some tests and thought that the anti-virals he was on were shutting down his kidneys. They stopped all of his medications, just giving him fluids to keep him hydrated.  By Thursday morning he was incoherent and one of his doctors suggested that we come on up to the hospital.  Thankfully, a family friend had agreed to check on Dad Thursday morning and stayed with Dad until my Mom, brother, and I could get there. Mom got to see Dad for a few minutes before the Doctors took him off for testing.

The doctors scheduled another MRI (that's a total of 3 in a week---Holy Medical Bills Batman!), Lumbar Puncture, and lung scan.

Dad returned from tests around 2 pm. And, seeing him was absolutely terrifying. He knew who everyone was, and most of the time could say our names. But, kept repeating the following words: please, ok, sucks, and pain. He also answered questions incorrectly- mostly with his birthday.

 Something like this:

Me: Dad, who am I?
Dad: Ashley, ok, ok, please ok.

Nurse: Who is your wife?
Dad: Laura
Nurse: How long have you been married
Dad: 7//7/xx (his bday)

Nurse: Show me how to press the nurse call button
In response Dad touched his nose
Repeat this process 3x.

Nurse: What year is it?
Dad: uh, uh, let me think.
Nurse: Is it 2011
Dad: No
Nurse: is it 2010?
Dad: No
Dad: it's 1860.

Nurse: Where are you?
Dad: Uh...uh

Even when no one was talking he would say:  "pain, pain, pain- it sucks, this sucks, it sucks. . . please, ok, ok.

That being said, he would have his occasional moments of clarity.
Drew: Mr. John, Andrew Luck is staying at Stanford.
Dad: Oh really? Interesting. (who knows if he really understood, but very appropriate response).

When given some water on a sponge he said, "oh that's good...damn good."

He also recognized Sophia, his first grand baby, and in the midst of his babbling when Sophia squealed at the toy she was playing with he responded in a high-pitched, baby friendly voice: "Hi Sophia."

The moments of clarity provided us with hope, but at the same time made me want to break down into tears. You almost wanted to shake the real dad out of this impostor- you knew he was in there somewhere.

We were so scared that the inflammation had traveled to his brain, which the doctors wouldn't be able to do anything about.  My dad is such a SMART man- he is a news junkie, loves trivia, and is such a good advice giver. To see him confused, hurting, and babbling like a child was absolutely heart-wrenching. It was even worse to think that his state might be his new normal.

In the midst of all of this my mother-in-law Annette, and her friend Susan called to pray for us. I was hesitant to get on the phone fearing that the tears lingering right behind my eye-lids would start to flow and I wouldn't be able to stop them. But, instead, I felt calm and ready to face whatever news we would receive. Thank you, ladies. Prayer works.

Then, thank GOD, one of his neurologists came in to say the MRI showed the inflammation hadn't traveled. In other words, this problem likely was related to his kidney function and reversible.

John took Mom and Sophia back to the house and Drew and I waited outside while the infectious disease doctors performed a lumbar puncture. The results of that test looked good as well, and the infectious disease doctor attributed his decompensation to the build up of anti-virals in Dad's system due to the failure of his kidneys to excrete properly the medication.

As the night progressed, Dad remained confused, but the babbling subsided somewhat. I stayed at the hospital until about 12:30 am. When he began to rest, the night nurse told me to go home and get some sleep and promised to call us if anything changed.

The next morning John headed to the hospital and called- Dad was back. When I arrived at the hospital later, Dad was cognizant, and speaking normally. (prayer works).  He was still a little confused, and had only vague memories of the past two days.  He had to think a little bit longer than usual to respond to questions and talked in circles a bit, but compared to the day before it was MIRACULOUS.

Dad  is essentially the same in terms of his paralysis, although the doctor's think maybe he has seen a 10% improvement.  As for the neuromyelitis optica, his main neurologist does not agree with that diagnosis, and thinks he has atypical transverse myelitis. That doctor also wanted to be conservative with his treatment, despite the opinions of some of the partners in his practice. Big. Egos. Suck. Thankfully, after we politely (ok, I am sorry, I am not sure if I was polite at all :\) told him that we wanted to know all of our options, wanted to explore the NMO diagnosis further, and wanted to continue the consult with the Mayo clinic he didn't push back. We have to wait for Dad's kidney function to restore a bit, but then will discuss starting apherisis (sp?).

I realize I have rambled on for quite a while, and the sad thing is I could keep right going.  The past two days feel like a week. We have experienced every emotion in the book. However, instead, I will stop writing and come back later to discuss the emotional side of things, how mom is handling all of this, and the plan going forward.

In the meantime, please pray that dad's mind recovers fully, that his paralysis begins to reverse, for his doctors (primarily that they put aside competitiveness, egos, etc. and focus on dad), and for mom- she has been SO strong throughout the past few days, but her little body has taken a beating and she needs extra strength.