What a day! Talk about information overload! We covered so much information in such a short period of time. I don't know how the professionals keep it all straight let alone us. We are supposed to read it all and be ready to sign a bunch of papers tomorrow. This is more homework than I ever had at school. Maybe they will give us an honorary nursing degree.
This afternoon, they did a neurological exam on Vittoria. It was heartbreaking in the fact that they had to bring her off her meds to wake up enough to see if she had function and control. She cried and tried to talk to us but couldn't because of the tube. She was so brave and worked so hard to do what they asked even though she was feeling the pain. We hated to see her like that, but happy to see she was able to do it. It was so comforting for us to be able to talk to her and know she is still there. She is such a fighter!
After the neurological exam, they had to turn her bed space into an operating room so they could open her up wash her chest out again. They had to redo a drain tube that had become blocked. We had to stay away for a few hours while they did it. That was hard to do after being there talking to her just before. Now she is heavily sedated again.
Tomorrow we learn all about heart pumps, and more about the transplant process. I'm a little worried about the costs. I guess that is what we will discuss in our 10am meeting. I know this stuff is a extremely pricey but you know, there is no price too high for the life of a child. I can honestly say that I will willingly give up everything we have worked so hard for to give my little princess a fighting chance.
Now it is all about the qualification process and pray that she qualifies. A lot of doors close if she isn't a candidate. I now feel at peace with the road we are taking. I know we are moving in the right direction and we will see where it takes us. Please keep praying for my little princess.... Goodnight...
I have been reading the comments on the different posts, and it humbles me to know that so many people are praying for my little girl, friends, family, total strangers..... I honestly don't know how I can ever repay all the gestures of kindness, the comforting words, the hugs and prayers...I probably don't make much sense..it's 11pm, we are exhausted, I have not stopped crying since last Tuesday and at times I feel numb...like I'm not really living this, like I'm going to wake up and go to my girl's room and get her ready for the day. People talk to me and sometimes I stare at them not really knowing or understanding. I feel like I'm underwater. I miss being awakened in the middle of the night by this dark shadow on my side of the bed that tells me she has had a bad dream, or the cuddling on the couch with the four of us, or the trying to get her hair fixed for school and we always end up doing a ponytail because it's the only hairdo that I know how to do. Every single time I go to see her now, I just want to grab her and hold her tight, my heart literally breaks when I see a little tear forming in her eyes...I think I felt my heart shattered last Tuesday and it has not been the same. I have been praying for a miracle because she more than anybody deserves one. She is fighting hard and so are we. I guess now I know why I don't write posts... my eyes are full of tears again for the love of my baby girl...