8/27 Update
Another rough day without any real progress to report. I saw Patrick's surgeon on the way in and he indicated he wanted to talk to us about the cath conference from yesterday. He indicated that he wanted to be "fresh" when we spoke, which to us suggested a big talk is coming. After today, we're not surprised.
The plan for the day was to get Patrick extubated and try to figure out where his fever was coming from. Although they made some progress on weaning him, he is still intubated, which means more morphine and dexmed for sedation. He's badly constipated and has made no progress even with a suppository, colace, miralax, and rectal temps. His nurse asked if he could get a stomach x-ray, but the critical care doc thought it was just air in his intestines. Neither the nurse nor I really agreed with that, but I figure it is something that can wait until morning.
His fever has gotten worse throughout the day, even after they switched to IV Tylenol. During evening rounds, it was 40.2 (104.3), so they ordered a cooling blanket for him. There is concern that if he gets too warm, he'll get an irregular heartbeat, which he really doesn't need right now. All of the cultures they took yesterday are still negative, so they still don't know what's causing the fever.
He had an echo today and the images were not good. Generally, the left ventricle is larger than the right. When they said his RV was dilated, they were not joking--if his left ventricle appeared to be the size of a quarter, his right looked like it was the size of an orange. His RV pressures are now super-systemic--it was 75 while his systolic was 65. Even with all that, he is still shunting left to right across the fenestration, which makes no sense to anyone. Their best guess is that the RV simply has such poor function it can't push the blood across the fenestration.
The doctor who performed the cath reached out to some of his colleagues at other places and one of them suggested putting Patrick on dopamine. Unfortunately, it caused his heart rate to increase to 212, so at evening rounds, they stopped it. This was definitely the right call, as his heart rate dropped over 40 bpm within 5 minutes to the high 160s, low 170s.
His surgeon was still in surgery during evening rounds, so we are scheduled to meet with him at noon tomorrow. I am doing my best to stay positive, but I'm also trying to be a realist and, at least to me, none of this sounds promising. We'll see what happens tomorrow.
In related news, we had our good friend Rev. Greg Briggs out to the hospital today to baptize Patrick. We still want to have one at the church in which his extended family and godparents and our community can take part, but given his condition, I wanted to go ahead and get it done. We have a lovely service and Patrick's nurse took pictures. We are so grateful to Greg for making time in his schedule to do this for us.
We also made foam board signs for Patrick's room with his motto (Rest, Recover, Cuddle, Grow) on them, with sharpies for everyone to write him little notes. The staff really liked the idea and some of them have already left notes. I'll try to remember to post a picture with tomorrow's update.
Please continue to keep us all in prayers.
