There seem to be two areas of concern:
- There is a small-to-medium leak in his tricuspid valve. This isn't a major deal b/c this valve only sends blood to the lungs (as opposed to the brain and the rest of the body). She said everyone's tricuspid valve leaks a little bit, but his leaks more than normal. This was not the case before surgery. This wasn't a huge concern to her, nor are they planning to correct it. She just wanted to make us aware of it.
- The left side of his heart isn't clamping like it should. This might be because the surgery was harder on his body than we thought. She said the person who did the echo earlier today didn't do it quite in the way that she normally does, so she is going to return later tonight to do another one. She is starting him on a new medicine today called enalapril. It is a high blood pressure medication, but that is not why he needs it. (His blood pressure is *slightly* higher for his age group but not a cause for worry.) He needs it to relax the arteries so that the heart doesn't have to work as hard. This should help him to recover. He needs more time in the hospital (especially on this new medicine), so along with the echo tonight, they're going to do an echo (which, if you'll remember is just like an ultrasound of the chest) on Friday morning to recheck it. So the earliest we could come home is Friday. (Though I'm doubtful that it will be that early.)
They are also going to check his thyroid to see if it is functioning properly. It was checked at birth (and showed no problems) and we planned to have it checked at his six-month well visit. Babies with Down syndrome commonly have thyroid problems. (Thirty percent of people with DS have thyroid disease at some point in their lives.) An improperly-working thyroid could be causing problems with his heart.
Other areas that are concerning me are:
- He seems to be taking longer to nurse than before his surgery. Sometimes up to twice as long per side. Maybe he's hungrier. Maybe he is having to work harder to eat b/c he just had surgery. Maybe. Maybe. I just don't know.
- Before surgery, the cardiologists would always ask if Benjamin panted or sweated when he nursed. My answer was always no. But today, about an hour ago, when I was feeding him, the back of his neck felt kind of warm and moist. Maybe he's just hot. Maybe he just hasn't really had a bath in almost a week. But maybe it's a heart issue. He has smiled a few times today, but has seemed to be in much more pain than yesterday.
Please pray. I'm just tired. And sad. And worried.