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:
http://www.organdonor.gov/default.asp
http://www.lifelinkfound.org/
PLEASE consider becoming a donor.
You may not remember us, but we met you guys at Group Link (my friend was in the hospital with reversal of cord flow with one of her triplets). Just wanted to let you know that we are praying for you both and for your beautiful girls, especially for healing for Eden and a sense of peace for both of you.
ReplyDeleteKatie and Ryan Olson
I know there is nothing worse than watching your child suffer. But Eden is such a fighter and can feel your love and strength. I hope you feel the love and strength of all the people that are thinking about you and praying for you. Sometimes it can help carry you through those darkest days.
ReplyDeleteScott, thank you for your nice note. We care a lot about you guys and your girls - it's amazing how shared experiences like ours bring strangers together to make this "family" we all are. I can tell there are so many people who are impacted by Eden and Reagan and feel a strong connection to your family.
Your courage and dedication to your girls is inspiring. I think of you guys all the time and pray for the best possible outcome - your two girls home and healthy.
With love,
Steph