Update from the EMU

Though we've only been here a little over a day, it seems so much longer.  When we arrived yesterday, it took them a while to get everything set up.  Thus, they missed one of the big seizures they wanted to catch.  B raced down the hall, grabbed the EEG tech, and brought him to the room.  He started putting all of the leads on my head, but it wasn't fast enough to catch that one.  The new doc came in amidst that and it took a while to be able to open my eyes to meet him.  Then, I had another one.  They caught it on the EEG, but it was one of the ones I have all the time, not the new stuff.  I had a total of six seizures yesterday, 20 in the last three days.  So, it's been very tiring. 

Through much prayer & discussions with the docs, we have decided to move forward with the Plasma Exchange.  They believe that my seizures are autoimmune in nature.  The Mayo Clinic found an antibody in 2010 that was supposed to be less than .02 and it was 4415.  We have tried to treat it in the past with other immune suppressants with only an increase in seizures.  However, the docs still feel that the best approach is to get rid of this antibody. 

Plasma Exchange is scary due to my Postural Orthostatic Tachycardia Syndrome (POTS).  All other hospitals have said it is too risky and they wouldn't attempt it.  However, UTSW says that we are out of less risky choices.  They see three possible steps:

1. Keep doing what we're doing-the seizures are continuing to worsen and are becoming more and more frightening.  Thus, they don't like this option.
2.  Start aggressive chemotherapy with a drug that would completely suppress my immune system and hopefully remove the antibody forever.  The doctors predict that we would do this regimen for at least a year, possibly two.  However, this would take a few months before they would expect to see any results (again, not good due to the increase in number and intensity/severity of the seizures).
3. Plasma Exchange (PLEX)-basically the "washing" of my blood of these antibodies.  This would most likely only provide a temporary "fix."  In short, they remove my blood, clean it of the antibodies, and pump it back in to me.  The miracle would be that the antibodies would never come back.  However, the docs have explained to us that this is not a typical response.  They hope this would be a quick fix and help calm the seizures a bit (assuming the antibodies are the cause) so that they can then start the chemo.


So, they are continuing to watch me over the weekend in the EMU, seeing if they catch any of the new seizures.  Then, we are going to be moved to the NeuroICU on Monday.  I will have surgery Monday morning for them to place a central line.  They hope to start the first treatment Monday afternoon. 

Again the procedure is scary due to the fact that my blood volume is already dangerously low and they will be removing so much at once.  They will be testing and monitoring many different levels.  We are not sure that I will be able to even sit up in bed-dependent upon my response to the treatment.  Miss P can not come to the NeuroICU and so it will be a tough while not getting her sweet hugs and snuggles.  They anticipate five treatments which would be about ten days if all goes smoothly.

Prayer Requests:
1.  We would Trust in the Lord with all of our hearts and lean not on our own understanding. Proverbs 3: 5-6
2.  Provision-If B doesn't work, he doesn't make money and so things are very tight since I've basically been in the hospital for more than two weeks. 
3.  Wisdom & listening ears for the doctors.