Today was a disappointing day for me. I took the morning shift again so that Sam and I could work with the lactation consultant around 10. When I arrived his pacemaker settings had been changed. There are lights that flash on his pacemaker, and we'd only been seeing one color of lights. This morning, one side was flashing a new color. I didn't know what this meant, but I foolishly got my hopes up. I spoke with the nurse when she came by about 30 minutes later, and she was a little bit clueless about the settings (We've been switched over to non CV nurses in the recent days, so these nurses don't have as good of a grasp on the specifics of his pacemaker. No one told us about the switch, but it became fairly obvious today.). So, for no good reason at all, I began to think maybe he was doing better.
However, when the doctors came by for rounds about an hour later, I learned that they had just changed his pacemaker to a new setting and the different colored lights didn't mean anything. He is still in complete heart block and the pacemaker is needed to pace his heart at a higher rhythm. He still has an underlying heart rate, but it's too low to keep him with a stable blood pressure.
After having the new setting explained to me, I wasn't devastated. However, throughout the rest of the day, I found myself to be irritable and grumpy. We had our first bad experience with the nursing staff, which didn't help matters. Most of our nurses have been spectacular, but this one seemed to be impossible to track down. Even though Samuel isn't the sickest kid in the CV ICU anymore, we are still completely dependent on the nurses to get him out of bed for feedings. It was annoying to never be able to find her, or to feel like I was inconveniencing her by asking to nurse.
I also had a scary moment with Samuel this afternoon. I was holding him in the rocking chair next to his bed, when I heard the monitor beep. This isn't unusual because he is always knocking his sensor off his toe that measures his oxygen levels. I glanced up at it and noticed that his heart rate was dropping. It was being paced at 120, so seeing it go into the 90s and then 80s totally freaked me out. The nurses and doctors came in and messed with his pacemaker. They had to turn up the voltage in order to get the pacemaker to capture again. Basically, the places where the wires are attached to his heart are developing a little scar tissue around them. This thicker tissue makes it a little harder for the electricity to get through. This is not unusual for a temporary pacemaker. They fixed the settings at a higher rate and his heart rate stabilized again. He showed no signs of distress during the whole episode.
My heart, however, was racing for the rest of the afternoon.
My one positive for today is that Samuel had a really good nursing session. So, I will take that and run with it.
I needed some perspective today, so I pulled these up to look at. The first picture is Samuel, about 2 hours post-op. The second one is him taking a nap this morning (...and yes, he is sleeping with his eyes cracked open. So weird.). He has improved leaps and bounds in the last 7 days, and even if we have to have a pacemaker, I am extremely thankful that he has done so well and that he is still here with us.