Dear Blog Readers and Bob Lovers-
We are finally at the University of Virginia and on all the right medicines that I would want to have him on with a video monitor of him and his seizures all the time with a full time epileptologist monitoring his seizures and recommending medication adjustments throughout the day. This feels like a huge weight off of my shoulders because although Riverside hospital did a great job of diagnosing him with autoimmune v. paraneoplastic limbic encephalitis and got him started on steroids 4 days into his disease process, the last 2 days it has been clear that they weren't sure where to go with him while we waited for our transfer. After we got to UVa and had a parade of 5 different doctors who all seemed to have sound ideas about how to better his care, I felt that I could sleep in a different way than I have slept in the last 11 days. For the first time except for the hour and a half when we left and he pulled out his ventilator, everybody on the team went home and slept and that was a blessing. Plus that meant we all got to have some time with little Everest, our joy in this time. :)
Today we had rounds and after their reading and thinking the team is now completely on the same page with me and the experts I have involved (I like to call these guys Dad's Big Brains). We are going to give him 2 heavy duty medications called Rituxan and Cytoxan to shut down his immune system to stop the attack he is experiencing on his brain. They say that getting to these medications 11 days into his illness is "as aggressive as you could hope to be" and much earlier than many people get treatment. This makes me feel that we have not lost time in our treatment plan with his transfer and we are getting him the very best treatment in the very best fashion that you could hope for with a bad disease. On top of the immunosuppression, he is going to get a tracheostomy and g-tube so he will have the least risk of infection while we allow his brain to recover. We will do these things today and then we will pray and maybe after some weeks to months Dad will be back.
I feel very good. I feel very hopeful. I can't wait to have my Dad back. I am so happy that if you are reading this you are praying for the same things as me.
With love,
Bryn
We are finally at the University of Virginia and on all the right medicines that I would want to have him on with a video monitor of him and his seizures all the time with a full time epileptologist monitoring his seizures and recommending medication adjustments throughout the day. This feels like a huge weight off of my shoulders because although Riverside hospital did a great job of diagnosing him with autoimmune v. paraneoplastic limbic encephalitis and got him started on steroids 4 days into his disease process, the last 2 days it has been clear that they weren't sure where to go with him while we waited for our transfer. After we got to UVa and had a parade of 5 different doctors who all seemed to have sound ideas about how to better his care, I felt that I could sleep in a different way than I have slept in the last 11 days. For the first time except for the hour and a half when we left and he pulled out his ventilator, everybody on the team went home and slept and that was a blessing. Plus that meant we all got to have some time with little Everest, our joy in this time. :)
Today we had rounds and after their reading and thinking the team is now completely on the same page with me and the experts I have involved (I like to call these guys Dad's Big Brains). We are going to give him 2 heavy duty medications called Rituxan and Cytoxan to shut down his immune system to stop the attack he is experiencing on his brain. They say that getting to these medications 11 days into his illness is "as aggressive as you could hope to be" and much earlier than many people get treatment. This makes me feel that we have not lost time in our treatment plan with his transfer and we are getting him the very best treatment in the very best fashion that you could hope for with a bad disease. On top of the immunosuppression, he is going to get a tracheostomy and g-tube so he will have the least risk of infection while we allow his brain to recover. We will do these things today and then we will pray and maybe after some weeks to months Dad will be back.
I feel very good. I feel very hopeful. I can't wait to have my Dad back. I am so happy that if you are reading this you are praying for the same things as me.
With love,
Bryn
We are all definitely praying for your dad and entire family. We love you and our thoughts and prayers are with you always. - Dira
ReplyDeleteSending love and healing to all.
ReplyDeleteAndrea Gaines
Evanston, IL
The IAC Board and friends of the Board will keep praying and sending support until Bob is completely healed and his own big brain is churning out new ideas!
ReplyDeleteJust want you to know that I'm praying for Bob's healing and for peace to surround you all during this
ReplyDeletedifficult time.
Your cousin in San Diego.
Lindy