We have been been here for one week and its been a rough one. Eden is very critical, on maximum support and completely sedated with a paralytic medication. The MD's are trying to uncover why her pulmonary hypertension appears severe sometimes but not other times. She also has had many episodes of desaturations which results in her needing to be bagged. I hate to watch her go through this and wish everyday that I could take away her pain and struggling. The transplant team and pulmonology have had many conversations about her and are still evaluating when to put her on the lung transplant list.
I met another family here whose daughter is waiting for a lung transplant, she's older than Eden and also is very sick. They are very supportive and have answered many of my questions. I pray that E (their daughter) can receive her lungs very soon and go home with her Mommy and Daddy to live a healthy, happy life.
Thank you so much for praying for Eden. She still needs so much prayer. God can do miracles and we have to keep strong in our faith to know that he will take care of her.
A I mentioned here is some additional information about organ donation:
PLEASE consider becoming a donor.