The emails get a little harder when you start running out of stuff to say. I kind of feel like my tank is on empty. First, thanks to all of you. Thank you for bearing this burden with us, you can’t imagine how grateful we are for your love, support, and most of all prayer. So thank you, thank you, thank you.
Madeline was transferred over to Children’s Hospital today. She took an ambulance ride and handled it quite well. The doctors got right to work here and the cardiologist came right up and started a new ultrasound. We were praying and praying for good news but unfortunately Madeline loves hanging out right in the middle of the gray area. She is one in a hundred million and refuses to let anyone diagnose her. She is textbook “non-textbook”. It was a long ultrasound and didn’t get any real news. There are some abnormalities with her valves (neither good or bad at this point – just abnormal), and the possibility that the left side of her heart only looks small because maybe the right side of her heart might be big. Once again the diagnosis ranges from “you can go home” to “surgery or transplant with low odds of survival”.
Seems like it’s gonna be a slow Sunday where they just monitor and learn her behavior. On Monday they will be hosting a conference in Madeline’s honor to discuss her and other cases. We are told that is where they will ask the “hard questions” and make the “tough decisions”. One decision could be simply to do an MRI and wait until the results of that before making any decisions.
Pray that Madeline’s heart and lungs continue to develop and get better. On anything to do with her heart it is more likely her lungs that will determine her chance for survival so pray for those too. Please pray a lot for us leading up to Monday. We might get hit with all sorts of news and have to make decisions on it. Not sure what that is going to look like but definitely can’t get through it without God’s grace. I am not really sure what else to pray for. I’ve been praying and praying and praying and finally heard back “Be still”. So we shall.
Shanker & Lisa