7/9 Update
So much for slow! Patrick had a big day today. They weaned his oxygen down to 4L/25% o2 and his sats are still upper-80s to mid-90s, with the occasional upper-90s as well. They dropped the milrinone to .5 and started adding enalapril (the "at home" version of the cardiac med). His heart rate has still been great today--110s to 120s, 130s at most when fussy. This evening he had a single episode where he got cold and clammy, but he didn't get really sweaty (diaphoretic). They couldn't get a temp from his armpit and his rectal temp was a little low, but otherwise he had a really good day. They bumped his feeds to 34ml/hr; the new goal is 38. Tomorrow they plan to increase the fortifier to make it 27-calorie milk and begin to compress the feeds over shorter time periods. The surgeon still wants another pH probe once Patrick is back to full feeds. I'm guessing that will be next week, but who knows. He had one dose of IV morphine this morning, but only Tylenol and Motrin since. They have also ordered mylicon for him in case his irritability is being caused by gas pain. The pharmacist will look at the herbal orajel I found, hopefully tomorrow, to decide if we can use it for his teething.
Whether he had a good day depended on who I asked. His nurses thought he was quite agitated, but the nurse clinician with CV said he had a good day and was very playful when various doctors and other staff came to see him. I noticed both versions of Patrick during my time with him this evening (My friends took me out to a baseball game for some self-care, so I wasn't there this afternoon to make my own assessment). Ultimately, though, we seem to be headed in the right direction. Yay, progress! I talked with my favorite nurse clinician about the big picture/long-term issues, and she helped me with a few things. One big thing I learned is that CHM only does heart transplants; not heart/lung. So, if Patrick does need both, the surgery will have to be done elsewhere. (A quick search reveals hospitals in Columbus, Ohio; Pittsburgh, PA; and Philadelphia, PA as the three that are probably closest). So, another reason to hope he gets his pressures down and gets his arteries to grow!
Hug me!
