Today started off rough. We came in to low sats and a low blood pressure. Overnight, they had to go up on and add a few meds to help stabilize and maintain her blood pressure. I have never seen her main presser med so high. Totally frightening. Her edema is also a little overwhelming - her poor little body is so swollen and looks so uncomfortable, it makes me want to cry. The edema is not only a cosmetic problem though, as it is restricting her lung and heart function too. She is on medication to try to help her pee it off but this morning, it still wasn't working as well cause her blood pressure was so low. We listened to the Doctor's round and discuss all of this, Dan's parents left and then Dan and I went and did laundry, since we are out of clean clothes.
When we got back to the hospital, her stats were still very low. The attending came and sat down with us and basically told us that she is very worried about her chances of survival. This hit both of us very hard and we lost it for awhile. I had a long talk with the social worker assigned to her case that made me feel a lot better. She told me that the doctors aren't giving up on her yet and that I shouldn't either. That really hit home with me and made me feel a lot better. They are going to keep trying everything they can; Naya is fighting her little butt off so I figured I better pull myself together and believe in a miracle.
When I came back from talking to the social worker, Naya's blood pressure had come up a bit and her sats were looking a bit better. She was also peeing A LOT more. I stood next to her for awhile, playing music off my phone and stroking her hair, which she seemed to really like. Her blood pressure and sats both came up again and have remained to a decent level while writing this and the pee is still coming. In fact, they have had to go down on some of her pressures because her blood pressure has been higher than normal at times. Which I will take and her nurse agrees. She seems to like it when her pressure is on the higher side.
I hope and pray that today is a sign of what is to come and her cycles will STOP. We are so proud of her and how hard she is fighting. She will be that miracle. I have to believe it.
PS - Here is the view of Downtown LA from Naya's room in Hollywood. At least she has a nice (and surprisingly clear) view :)