Thank you to everyone for your continued prayers and support! I (David) arrived at the hospital at 5:30am with the anticipation that Grace was going to be extubated, but when the attending arrived, he stated that he wasn't comfortable with that because her newest X-Ray revealed that the upper right lobe of her lungs had collapsed; therefore, no extubation so they could continue to give her support, pull off fluid, and help fix her collapsed lobe. In order to prepare for possible extubation this morning, the nurses needed to begin taking Grace off her sedation so that her body would demonstrate that she could handle breathing on her own, so Grace was squirming all over the place, trying to turn on her tummy, reaching up with her hands to try and get the tubes out of her nose and mouth herself, and kicking her legs up in the air. However, since the plans changed they had to start trying to resedate her, which is never a smooth process for Grace. The nurses gave her the max dosage for all the sedatives that she was approved to get and Grace wasn't even fazed by it. They kept having to get approval from the doctors to give her more sedation. Finally, after two and a half hours of squirming, Grace settled down. Another development for the day was a spiked temperature of 103.7, but by the time I left the hospital she was down to 99.1. The doctors did not seem too troubled by that, since she is already on antibiotics and they have already sent off cultures to see if there is any infection (we are hoping it is just environmental, since she had a brief jump in temperature the day before as well and it went down quickly after she had the blankets taken off of her).
A tremendous blessing for the day was Kristi being able to talk with our cardiologist from Boston. He expressed his sorrow for what is going on with Grace, his frustration with Grace having been discharged too early from Boston (while he was out of town speaking at a conference), and his preparedness to have a bed available in the ICU in Boston whenever it is needed. Also, he provided Kristi with some hope in regards to the long-term plan for Grace. He expressed that they would do whatever was needed for Grace. They would be happy to talk with TCH and work with them on any treatment for Grace or if we wanted to come to Boston he stated that they were ready to have Grace back and prepared to do everything possible to try and get Grace the best outcome possible. His mentality and approach was very different from what we have experienced at TCH thus far. He provided us with hope compared to doom.
We would be grateful if you could continue praying for Grace's lungs to desaturate and her heart to be able to adapt to its new circulation; for wisdom on knowing what direction we should move (between treatment at TCH or Boston); and, if we do end up returning to Boston, for the ability to figure out the logistics of getting to there, since she would need to take a medical flight.
Thank you for being present with us on this journey!
(I apologize for not having any pictures...that's what happens when I post).