Gillian Barre disease and my dad
I started an entry and then life got really crazy and never finished. So I delete and start again. Dear diary we're in the middle of a pandemic... is that how I start this? No really... we're in a pandemic. Life since the end of February and my last post has changed so much. Well life in general has, not sure so much if mine per say has exactly changed. Since my last post the state of California has gone into lock down, we all are supposed to stay at home unless deemed an essential worker. I, of course, am not that but thankfully Tom is. However both of us are able to work from home for our jobs. But that doesn't mean I've escaped the affects of the pandemic with work...
Let me back track a bit.
We had a great time out in Colorado the last week of February visiting my dad and my mother. Dad is now in a long term health facility because he's developed a disease called Gillian Barr disease and essentially became paralyzed overnight. This happened right before Nahveea was born and I was unable to fly out there to see him because I was about to pop with a baby. I think it was end of September when this first happened, around 35 weeks pregnant. I can't totally remember. I remember they had him in the hospital for a few week and put him on dialysis to lower his white blood cell count so it would stop attacking his nerve endings. After that he was released to a short term out patient facility to go through physical therapy and hopefully get back home. While he was there he developed immense pain and they drugged him up a bunch to help with the pain.
I remember that first call from him after that had happened. I was just out of the hospital after having Nahveea. I remember I was in the drive through line at Coffee Bean getting a coffee and Nahveea was in the backseat of the SUV. Dad was talking to me on speaker phone and he didn't make any sense. He was slurring his words horribly and he couldn't string a sentence together. He was mixing up all of his words. I was horrified. Absolutely horrified. I started crying. I remember trying so hard to suppress my cry so that dad couldn't hear it and I didn't freak him out. I managed to finish my conversation with him with tears streaming down my face completely freaked out for my dad. A million things were running through my mind.
What was going on with my dad? Who was there to advocate on his behalf since he was no longer sound of mind? Who was drugging him up and why? Someone needed to physically be there to speak on his behalf. What the hell do I do? I'm here in California and can't do jack since I just had a baby and needed to be home with her. I remember calling my mother but she didn't answer so I sent this long text about everything that I had just heard / witnessed from my dad. Someone needed to advocate for him. I reached out to dad's friend Paul who had been there from the start for him. I also reached out to Susan Harr for prayer for my dad. Looking back on my messages now it was November 17th when I asked Susan to have Rod call me. I remember as soon as I sent that message Rod called me immediately. He told me they'd be sitting at the kitchen table together when the message had come through. I was so incredibly thankful.
I explained everything that was going on and he told me he would get in touch with Paul. Later he said that he that he had been going through paperwork and realized that he was dad's financial power of attorney. Something they had set up several years ago. I am so thankful that they did. I think it was later after that phone call that he went digging deeper in his papers and realized he was also the medical power of attorney. This took a huge weight off of my shoulders. I trust Rod to actually care. He is a good guy and loves Jesus. I've known him for years and him and his family have been a part of my dad's life for years.
Dad later told me that he was driving home one day several years ago and he couldn't get it off of his mind, he had to turn around and ask Rod if he would be his POA. I know that was the Holy Spirit and I'm so thankful for God's presence in all of this. I'm so thankful that we serve an amazing loving God who watches out for us. So he turned around and went to talk to Rod about being his POA and they set it up. I am so, so, so thankful. Someone who could actually speak on his behalf in the eyes of the law. I'm so thankful that my dad had the forethought to do that, or at least the willingness to follow the prompting of the Holy Spirit and get it done. I don't even want to imagine what this situation would be like had he not done that.
So Rod stepped up to advocate for my dad. Between Rod and Paul they got dad out of the short term care facility and back to the hospital. Apparently my dad had been in so much pain the facility didn't know what to do about it so they just kept giving him drugs to help with the pain. Once he was at the hospital they were able to find out that he had staff infections in his knees and near his spine, this was causing his immune system to flair back up again and attack his nerve endings again... Gillian Barr flaring up. So the doctor went in and flushed out the staff infection from those pockets and put him on antibiotics to catch any residual.
Since all of this happened my dad hasn't been completely the same. He's still not 100% there all of the time and I wonder if there was a little bit of brain damage that happened somewhere in all of this. I'm not sure because, while they have weaned him off of a lot of the drugs, he's still on some of them. So until he's completely off of any drugs, we wont know for sure. He is a million times better then he was when I first got that call while in the Coffee Bean drive through. Which I'm thankful to finally be able to have normal conversations with him.
Then this pandemic happened... and that will have to wait until my next entry.