Repost from my husband: @Steven Phillips
THE GOOD NEWS: Doctors down here think they may have isolated three specific possible conditions that may be the reason for Rachel's problems. THE BAD NEWS: we are stuck here waiting on approval from the insurance before we can proceed with testing to confirm findings. ARAUGH!!! Can't go home - can't proceed! PLEASE PRAY NEED MIRACLE RIGHT NOW!
Couldn't agree more but I'm feeling kind of off kilter with the new info as no one has really shared all that it means or could mean for me. Plus, it's been an awful pain day and actually a really bad cough day, too. My team of drs back home are working overtime to try to help get things sorted out but we really do need prayer for all of this to work out OK. I guess I got the two appts back to back to begin with, which is why I'm here so I'll try to trust for similar openings going forward.
I guess it's dawning on me that if the problems they are going to be looking for on the next round of studies/testing are actually conditions they find I have, I'll be looking at likely two surgeries. One I'm not overly nervous about, but the other would require surgical correction of the area in my mid brain where the brain stem is (where the spinal cord connects to the brain). I didn't realize that would be what would be needed and any surgery around the brain stem (controlling all autonomic nervous system functions) has a potential for some serious complications. I'm trying to just be at peace since it could be found not to be a problem but there is definitely a malformation of one of the bones in my mid brain according to the geneticist yesterday.
I need sleep so much, it would help the pain and the ability to cope and process all that's going on. I'm SO grateful for the new information and am trying not to get my hopes up (too much) that this could help because it would be absolutely awful to hear now that they know I have some malformed bone in my brain BUT they can't do anything about it (sort of a "sucks for you" type of thing).
Enough rambling for now. I'm not even sure I'm making sense now but I'm so grateful for my friends/family and I'm so grateful for your love and support. I'm feeling and acute need for it right now so, please know it's valued and appreciated.
Sleep well all, hopefully with wonderful dreams.