Sorry. I can't come up with anything catchy and cute tonight with which to title this one...But I can promise it will be short! :)
Talked to Will's dr tonight. Short answer: She is calling Cleveland for us to see if she can get our appointment moved up. Will's autonomic dysfunction seems to be worsening, so we obviously need to do something more to get him back to something that resembles stability, esp before winter and cold and flu season hit.
She also is going to contact our new and very appreciated case manager at Anthem to request home health for six weeks for weekly infusions to see if that will help the stability issue and prevent the many ER visits that always seem to be looming.
She asked me to call Dr Grubb in Toledo and discuss the cardiac arrhythmia we saw Friday night and continued to see today. Sitting, his heart rate is in the mid 80's which is ok but not awesome. If he moved around today it hung between 130 and 164...I don't mean running around, I mean just moving around. That is way too high for so little motion.
We're gonna talk by phone again as soon as we have more information...and I'll keep you posted.
I appreciate your prayers. I am blessed beyond belief with the outpouring of love and support I've been shown in the last few weeks, and I deeply appreciate it all. I am overwhelmed with Will's issues, with the needs of my other kids, with impending school needs, and with my need for sleep and running. :) Thank you for your prayers and for loving my family.