The ups and downs of these last couple days.

     Okay, so Rorie had a rough spot a few days ago her O2 sats were dropping like crazy! Her lowest one was 10% not good at all and she was on a ventilator, which typically doesn't happen! Every time her O2 would drop they would have to bag her and suction her and she would recover. At first the Dr's weren't sure why she wasn't letting the vent breath for her. One Dr finally said she could have asthma, they lowered her sedation meds and changed her ventilator settings, and started more breathing treatments. She responded much better after everything was adjusted.

     Rorie also was diagnosed with very very fragile bones (I am spacing on what it is called.). Her ribs and left leg are fractured. Her bones are so brittle and weak a diaper change could have fractured her leg. Endocrinologist Dr's (hormone Dr's) are stumped on why her calcium and other levels are so out of whack out of nowhere! She has been started on a drip to help supplement. Before our last hospital admit we have never had a problem. This problem with her bones is also related to her 22q deletion. 
     Rorie has also had a fever that has been coming and going. She has no other signs of a viral infection so Infectious disease team was called in to see if they had any ideas on what could be missing. If she could have a fungus or something like that. But she doesn't have any of those symptoms to fit with a diagnoses of that sort. So that wasn't much help. 
     Hematology was also brought back into the many teams that are involved with Rorie. A few months back when Rorie had a picc line placed she formed a blood clot in her left leg. We also found  several tiny blood clots in her brain, Rorie has no way to filter out blood clots due to the anatomy of her heart. When we were admitted this last Sunday a central line was placed in her groin and she has a clot in the right leg now. Now, today another picc line was placed in her right arm, I am praying hard that we don't get another blood clot! She is not able to be on aspirin right now because of her upcoming Nissan surgery. So we seem to still be getting hit from all directions. It could be worse though. As long as the Dr's don't find any infection or signs of something other than a fever, we will proceed to have her surgery on the 18th, because she needs it that badly.