Some days are harder than others. After C was extubated Saturday night, I was feeling pretty good. Sunday, during the day C got a bit fussy around 4pm. Our nurse talked to the resident and they decided to change his pacemaker settings to see if that was the culprit. I noticed C was a bit warm and asked them to take his temp. They did, and it was a bit high so they took a bunch of cultures. We're still waiting for those results. We had the same night nurse last night as the night before. She's not my favorite. I like to know why things are being done and I like to feel welcome in my child's room. Neither of those things happen with this nusrse. She was very competent and she took good care of C, she just generally made me feel like she didn't want to talk to me or for me to be there. When I left to go to the Ronald McDonald rooms for the night, I told the nurse to call if he needed me. When I got back in the morning, she told me he'd been crying for 7 hours. I'm not at all clear what about seven hours of crying didn't indicate that he needed me, but apparently it didn't. To be fair, she tried a very large number of comfort measures, I just really wish she would have called me. She is aware that I wished for a phone call, and tonight we have different nurse(s) -- one rock star of a nurse and the guy she's training. The guy is pretty cool, but not baby savvy and I don't feel a real connection with him..
I spoke with the nurse practicioner who spoke with the cardiac electrophysiologist and he's not comfortable making a call regarding the JET and the heart block until we've weaned of the amiodarone. It causes heart block and can do other weird things, so he'd like us to be totally off that for a bit then decide if C needs a pace maker.
C continued to cry for most of the day and into the evening. We've now got him in the crib which is angled in a bouncy seat which is angled with towels behind him to get him to sit up further. He seems relatively content at this time, but still not my happy boy. I have to keep reminding myself that this is not forever and he will be happy again, someday. Just not today.