The Medical Review Board at Texas Children's met Wednesday and unanimously approved Parson to be listed for transplant. We signed the informed consent for transplant and completed the last blood work. The only thing we are waiting for is insurance approval of the transplant. Dr Mallory has written a letter of medical necessity to substantiate the need for transplant to our insurance company. The transplant coordinator hopes to have her "officially" listed Friday - or by Monday for sure.
In the meantime, we have reacquainted with our friends in the PICU. In order to keep Parson's heart rate down, the doctors have had to keep her pretty sedated. She has had a few rough nights, but today was a much better day.
This morning, Dr. Malory arrived around 5.30ish for "dance lessons" to tweak the vent settings to help Parson and her vent "get it together". He describes the relationship between patient and ventilator as one that is much like two dance partners that must be completely "in sync". Dancing With The Stars -ICU ventilator edition. He must've stayed at the bedside for three hours or more adjusting the settings until he was satisfied with their "dance". (On the final performance, Bruno & Carrie Ann both gave them perfect 10's, but Len said he saw a tiny lift.) Like they say, you gotta dance with the one who brought ya.
Thanks so much for the prayers, texts, FB comments, messages etc. Honestly, as Par's condition has changed and we have had the string of bad nights, I have had trouble keeping up with responding to each one - so I apologize. This momma has been busy this week doing the "transplant two step". Please know that you are loved and appreciated even if I don't get the chance to respond.
Stay tuned for the next episode of dancing. Hope you enjoyed the show...