8/26 Update
Another rough day. He had an x-ray this morning and it looked "bad." He was "low" on his left side (which seems to be his normal post-procedure). They decided to wait to extubate him based on the x-ray, but began weaning him off the nitric. He had a blood transfusion yesterday, during the cath, and another one today. He kept being wild and trying to extubate himself, so he got lots of morphine and versed today. He ultimately ended up with a morphine drip. He doesn't want to be sedated and fights it, so he's on several different meds for that as well. The critical care doctor noted that Patrick got into something of a vicious cycle because he would get so upset at being intubated that he would stress his heart and lungs and make himself worse, resulting in a longer intubation.
He spiked a fever, which he had most of the day. At times, he would heat a cool washcloth in less than 2 minutes. They took all kind of samples to run cultures and began antibiotics just in case. He is very swollen and puffy, so they added a second diuretic and increased them both to three times per day. Needless to say, you can no longer count the number of medications he is on with your hands.
The cath conference was scheduled for 3p today. The doctors were still there when it came time for rounds this evening, so we don't have any new information in that regard. I spoke with one of the nurse practitioners this morning and confirmed that Patrick's issues have three components, but size is the main one. The other two are functionality of the conduit and reactivity of the vasculature (which the PAH meds are designed to counteract). The nurse practitioner indicated that folks seem to fall into "two camps," but that nothing was off the table and there had been some discussion about heart/lung already. She didn't say what the two camps were, but my assumption/projection is it's a question of whether to go the Flolan/aggressive treatment route, or move toward transplant. I told her about our contact with the other doctor and asked her to let us know what we needed to do to get the records to him. We hope to hear the results of the cath conference during morning rounds tomorrow.
After dinner, I went to check on him and he was finally resting comfortably--after more morphine and versed. His temperature was finally down to 99.5 from roughly 102. They managed to suction some junk from his lungs and were going to condense all his care so that his 10 p.m. meds would also be blood pressure time, diaper change, etc. and then the nurse could leave him alone for a few hours again. He's got a nasty rash on both legs from the blood pressure cuff, so they are trying to leave it off and only put it on when they need it, in addition to applying hydrocortisone cream a few times a day. Tonight, the goal for all three of us is to follow Patrick's mantra: Rest, Recover, Cuddle, Grow. Hopefully, things will be better tomorrow.
