Saturday, March 10, 2012

my dad

An update on my dad.

A few weeks ago, I shared what was going on with my Dad and asked for prayers. Thank you for praying for him.
I do have some good news, it's just not as good as I'd like it to be.

My Dad is still in the ICU at UCSF. Shortly after I shared what was going on, I got a call early in the morning from my dad's girlfriend Bev saying that his condition had worsened rather quickly. Based on what she said, I knew I had to get to the hospital- that I could not wait any longer. Jeremiah had been granted a brief time away the squadron in San Diego, so he was home if I needed to go. I did. I flew out to San Francisco, met my sister at the airport, and we went to the ICU to be with my Dad.

He didn't look good. He was heavily sedated, had a vent in, and several tubes and wires lay angled across his body and face. It was really hard. Even with the amount of sedation he was under you could still see his body start to tremor and spasm, and his face would turn purple, his heart monitors would go off, and it was clear he was in a great deal of pain.  The entire week was up and down. We had tremendous hope at one moment, and then hours later it would be dashed by results of a scan or test. We would see one area improve while another started to fail. I stayed for a week but had to come home.
It tore me apart leaving him. And I didn't want to leave my sister either.
It was so good to be with my sister again and spend time with her family. 
I missed my kids so much- that was the only time I had ever been away from them, except to have another baby. But I really felt like I needed to be with my Dad. 

*I wrote this post, but realized I left out one important thing. I also felt like I needed to fly out to be there for my sister. She had been at my Dad's bedside for a week by the time I got there. And she continues to go up as much as she can. She weathered the worst of it and saw my Dad in very bad shape. So what I saw, while it looked awful, was nothing compared to what she saw before I arrived. 

The neurologists officially diagnosed my dad with Stiff Man's Syndrome with the extreme subset of PERM, which stands for progressive encephalomyelitis with rigidity and myoclonus. The condition is very rare and we were told that he has the most aggressive case that's ever been noted. So. They attempted all known forms of treatment (there is no cure), and tried some treatments that they knew were incredible long shots. None of them worked like they had hoped.

He is now on a more experimental type of steroid treatment. And he is sort of responding- however, the spasms and tremors are still occurring, as is the pain and other symptoms, just not to such a severe extent. The steroids are causing another host of issues. He is extremely disoriented. He thinks he is at war and has been acting volatile, agitated and confused- all typical effects of treatment. He is mixing in truth/factual memory with fiction. Apparently for the past two days he has been asking for Jeremiah nonstop- he thinks he is in danger and is waiting for Jeremiah to rescue him. It is heartbreaking to hear. We just want him better. I miss the Dad I knew when my Mom was alive. He was happy and funny and witty and would play Scrabble with me until 3 in the morning. I don't think I will be getting that Dad back. Even if they figure out a way to control the spasms, it will come at a significant cost. Could you please keep praying? 

This has been so hard. For so many reasons. We have had a very rough couple of years. Struggles and issues and sadness and tears. I love my Dad. He's the man I measured everyone else against. Above all of the noise and the clamor that have permeated the last few years, I still hear the whisper of love. I love my Dad. And I want this all to be better. I want my Dad back and I want my babies to have their Grandpa Bill again. But mostly, I want him to have peace. 

So that's it for now. 

I have a feeling I'll be procrastinating tomorrow. I have a marketing simulation to work on and a finance test to study for. Which means I will probably be blogging first. That's how bad my procrastination is. When I know I am going to have so much to work on tomorrow, and I am saying I will likely be blogging before I even open a book. Awesome. 

And because I like to post with pictures and don't want to be full of gloom and sadness, here you go.


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