Weekend at Mercy's

The past few days have been quite eventful for Henry, in positive ways. We are now only five days since he had the Norwood surgery, but over the course of this weekend, Henry's heart made some big strides. (My apologies, as this one might get a bit more medical.) They ran several scans and x-rays Friday and Saturday. He had an ultrasound to confirm he does not have any blood clots in his arms or legs. His echocardiogram showed good flow, so he was able to come off of his two IV heart medicines, milrinone and heparin. These have been replaced with enalapril and aspirin (a quarter tablet, every other day!). On Saturday, Henry was able to start feedings through an NJ-tube that is passing the breast milk straight to his intestines. The goal will be to get him to feed orally, but until we are confident he has adequate blood flow to his digestive tract, this will allow him to start getting nutrition and growing. By Sunday, he was up to 7 pounds!

The good news kept rolling on Sunday, as they removed his second chest tube and the arterial line in his belly button. Now, all Henry has on him are his feeding tube, the high-flow nasal cannula, and his standard vitals sensors. For this being his fifth day after surgery, this is truly amazing!!

But as I said before, there are a lot of things for us to balance on this tightrope. Henry's lungs are what we are focused on most right now. One test showed some differences in movement between the left and right sides of his diaphragm, which is likely causing his rapid, shallow breathing. The doctor did not think they were too far out of sync (paradoxical) and it should hopefully fix itself in time. This is why he is receiving constant air through the high-flow cannula, to insure he gets enough air on each breath. Some positives are that he is at room air (21% oxygen) and they have been slowly lowering the flow rate all weekend.

They also found his left vocal cord is moving slower than the right (paresis). This is a possible side effect of the Norwood procedure, as some of the nerves in the vocal cords extend down to the heart, near where they are operating. The good news is that they do see movement, and they were able to see the left one completely open and close. Because it is not paralyzed, he will be able to swallow, but it make take time. Oral feedings will need to wait until they are confident both cords can close quickly enough to keep food from going into the lungs.

All in all, we are clearly moving in the right direction, but it is a marathon, not a sprint.