We lost a very close friend this last week and our hearts have been so sad.
Ella is still desating with any activity, some days it seems to affect her more then others. They just can't figure this out. We have now thoroughly examined the heart, lungs, and liver. She obviously doesn't have a healthy heart, but they can't find any reason for the desats with only activity, her lungs look great besides some minor chronic junk from the damage that her heart caused while I was pregnant with her, again not causing the desats. Her liver results were ironically abnormal, but again, this is not causing the desats.
At this point Ella is getting closer to her next open heart surgery (it is tentatively scheduled for June 13th), but going into surgery without knowing what is causing her desaturation can be dangerous. I mean, we're talking open heart surgery, it's complicated enough without going in while dealing with a mystery that may or may not affect this next surgery. Ella's cardiologist has suggested that he send all of her records to Children's Hospital of Philadelphia (CHOP) which, I believe, is the number 1 children's hospital in the country (2nd in cardiology) to see if they can think of something we may have missed in all of our testing. We have given permission for him to send the records and we are now going to start the most likely long wait to hear their opinion. We are praying hard that they get back with us fast due to the time sensitivity of needing to figure this out before her next surgery.
Please pray with us for wisdom for all of the doctors at Dallas CMC and CHOP that are working on finding answers for Ella. Please pray for God's provision if we need to go to CHOP. As you know, I just fought a hard battle against our insurance to cover Dallas, CHOP is not covered so we would need to start that fight over again and it would be a harder fight. Please pray for health, if Ella gets sick it could take weeks, even months to get over it and she has to be 6 weeks sick free for open heart surgery, also she needs to be completely healthy for any other testing that may need to be done. Please pray for Ella's protection from all of the anesthesia she has had to have for testing. Please pray for peace for us as we are getting tired of sending our baby in for test after test with still no answers.
We truly believe and know that God is in control. We know He knows what is going on inside of Ella's body. We trust that in His time she will have her next surgery, we know that He will provide for us just as He always has, but we are also scared. We know that just because God is in control, that doesn't mean things will always turn out the way we hope. At this point we are trying to trust the fact that God sees the whole picture and we are to follow Him and trust because we just see a small piece. This is a hard season, it has been for the last 3+ years, please pray for us to have strength.
update later in the day:
We have also decided to send Ella's records to St. Louis Children's Hospital. They are covered by our insurance and have proven to be very helpful. Maybe between Dallas, CHOP and St. Louis we can find the answers!