Today did not go as we expected, but that seems to be how it goes with Ela these days. As you know her cath was scheduled for today. But during prep for the cath this morning, we noticed her already fast breathing become even faster and she had to work harder to breathe. Ela also had a short-lived low grade fever. The team re-assessed, got even more bloodwork, and tests. The initial consensus was that this cath is too important not to do, so things proceeded. Anesthesia team took her back and began the sedation process. Then about an hour later, the cath Dr came to talk to us. He said that the team re-assessed again once seeing how she was responding with some sedation back in the cath lab and decided it was best for her safety to not proceed with the cath today. So the CATH did NOT HAPPEN today.

We spent the day back in the CICU (again) where she was monitored, had more bloodwork and testing done, and another plasmapheresis infusion. Tonight, she was able to move back over to the CCU. The concern is possible infection or maybe low cardiac output. So we are waiting for some results to come back over the next few days. She did get some antibody test results back today. They are still high, but are better than the last set of results, so that’s good. It means the plasmapheresis is probably helping. The cath remains a very important priority. As long as Ela has an uneventful weekend and there isn’t any infection happening, that cath will most likely be Monday or Tuesday. We will keep you posted.

Ela is keeping everyone busy and on their toes. The doctors, in their words, are “bothered” by all the things happening with her. They say, “she is not textbook…she is not typical…she’s interesting…” We are in one of the best hospitals in the country so it’s not very comforting to hear those words describing your daughter. But we are thankful for their honesty and thoroughness. This also reminds us that our ultimate trust has to be in God. Our peace is in Him and from Him. He is unchanging. The verse that has been repeating in my head all day today is Isaiah 26:3–“You keep him in perfect peace whose mind is stayed on you, because he trusts in you.”