Savannah had an awesome night last night. Jon and I were actually able to sleep pretty well in her room without the sounds of her alarms going off. The only time her oxygen drops is when she needs to be suctioned and it only drops in the 70s then. That's a huge improvement for her sadly. Her heart rate was of concern post surgery being in the 200s but after some kind of saline bolus she is sitting steady in the 150s/160s. That's great for her with her typical heart rate being at 100. I'm hoping her rate will stay that strong and its not just elevated because of pain. Her blood gases continue to be good, so they are weaning her vent.
On a side note, I came home today to get things squared away with insurance crap and get things going as far as possible transfer. However, its been a wasted day besides seeing my 2 other babies. Transfers are complicated and involve her docs now making the initial call. I asked if her records could be reviewed first, but again told her doc now needs to make the call. So, with that, we take the risk of being transferred to another hospital that knows nothing of her syndrome and says "I don't know" like we've heard so many times before. So, for now I will continue to try to get a hold of the genetic doc in lville (who doesnt like returning calls it seems) and try to get a video consult with the doc in Pennsylvania that is an "expert" in PKS. So, fingers crossed.
No comments:
Post a Comment