Hi -
I just joined this group a week ago with good feedback from several of you - now she has been in the hospital for basically a week - now in critical care, heavily sedated - lungs, sinuses all issues - kidneys producing problems but with the sensitive condition she is in they won't do a biopsy of that area (and since she has a horseshoe kidney on top of that) - doing steroid blasts and then start the Ritux (sp?) infusion.
Might have to drain the sinuses - and she is a MRSA carrier - I know she wanted to them to do procedures if they were going to help but I'm starting to get worried about that. She never had any event that resulted in loss of oxygen to brain or heart stopping, so those are two pluses.
Anyway, just updating...
NEW UPDATES
They are trying to get her off of the sedation - she is finally making attempts at waking up and I was there for that today. She made eye contact, physical movement to commands, squeezing hands about 4 different occasions.
My main concern right now is that if she can't breathe on her own, then a tracheotomy would need to be done after 10 - 14 days on the tube as that long on a ventilator is permanently damaging to the vocal cords.
The WG has definitely scarred her lung tissues so when she tries to make efforts to cough, it's not a cough that has anything to suction off.
It's amazing how little they know about this though - even today they were mentioning something about "TB indicators" - at least being armed with more knowledge I can say confidently - "Nope, that's the Wegener's!"
Bookmarks