As things stand for now, they want to keep me for quite a bit longer than originally intended, possibly through the end of the week. I still had two seizures Sunday, despite being on the third day of the steroids. So, they are going to add two more days to see if we are more likely to get results. If so, they would lean in the direction that this is Hashimoto's Encephalopathy (a.k.a. Steroid-Responsive Encephalopathy Associated with Autoimmune Thyroiditis-SREAT). When the doc came in today, he said he doesn't know if they believe this could be the answer b/c we should have seen more obvious improvement at this point. However, we still need to play it all by ear incase it does work. If it does, how long would I go without a seizure under the current treatment? Would I need to occasionally add steroids to keep them under control? Would I need to have the IgG injections? All up in the air.
If that doesn't work, they are going to start playing with my meds on Wednesday and see if we can get any relief. We have seen that I tend to respond to IV meds rather than oral meds. So, after we see Wednesday's results, they are going to consider that route and see what happens. They can't send me home on IV meds and so they might have to find a way for me to get injections of the meds if that is the only way my body will absorb the meds to get seizure control. They just all keep repeating how rare of a presentation this is...
My nurse on Sunday, E, was wonderful. When he came in Sunday morning, he wanted to know every last detail about my seizure the night before and the ones I had that day and how they were different from any previous seizures. He was so thorough and caring. He's from Scotland and so we have fun talking to him and trying to understand certain parts of his accent! We also got to see pics of his precious son who is such a little cutie!
The doctor that I saw the first time I was here, Dr. S, stopped by Sunday night. He spent about an hour in here explaining to Mom and I what they think is going on...it's all a guess to them right now was the gist. Anyway, they want to hit the Encephalopathy path first. If no response, they will move on to other choices. He said they all spent a bunch of time Friday discussing/arguing my case. It's just a very rare presentation and has them stumped. He also said that Hans Luders, director of the Epilepsy Unit at the Cleveland Clinic, will be here next week. They plan to discuss my case with him, as well, and see if he can add any insight.
They are beginning to believe more and more that these are originating in the insula which to a large degree removes the ability to do surgery. It would be too risky because it's so deep in the brain and would require a lot of digging and could cause major issues with language and vital motor functions. They are also seeing the seizures on both sides of the brain which would make surgery difficult. They need to see if they are actually starting on both sides or starting on one and just progressing to one or the other. So, they want to go back and review the MEG from Wednesday and Friday and see if they can find anything that gives them more direction.
The Endo team should be back today to do an ultrasound of my thyroid and check on the Diabetes Insipidus stuff.
B will be here around noon today. Mom has been trying to get moved in to her new house and I've put a nice kink in that. So, hopefully, she'll be able to accomplish some packing and moving once she gets home. She has been such a blessing this last week. I'll miss her when she's gone.
It will be nice to have my hubby here. It's amazing how the two really do become one. It just doesn't feel right without him here.
Finally, this is a picture of one of the angels here at the hospital. This is Irma, she not only cleans my room, but refreshes my soul. We met her the last time we were here and she was adorable. When Mom and I arrived on Wednesday, we saw here the minute we got off the elevator. She said that the Lord had brought my name to her heart on her way to work that morning and she had been praying for me.
Today, she asked her supervisor if she could come in and clean my room (even though it wasn't on her list of rooms for the day). After she cleaned the room, she prayed with us. I think she does an amazing job speaking English. However, she wanted to pray in Spanish and she made the point that the Lord understands her perfectly. Though I only understood parts of her prayer, I could just see the Lord sitting there understanding her every word and realized that just because I don't understand it, doesn't mean HE doesn't. He knows exactly what is going on with my body, even though the docs are stumped. There were moments in her prayer that I understood what she was saying and others when I didn't at all. There are many times in walking this road that I've seen (or felt like I understood) His plan and other times when I didn't at all. Today's prayer time with Irma, was a reminder to me that HE truly does see the whole picture and understand every bit of it, whether I do or don't. She also said that she and some of her friends were going to meet tonight at 8pm to pray for me and she wanted us to pray, too. She said for us to get as many people as we could praying at 8pm tonight.
"Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven."
Matthew 18:19
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You are making an impact on so many lives just as Irma is doing to you. You are in our prayers. Take care and God Bless.
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