I haven't provided a recent update because I haven't been sure what to write. We are mostly just waiting. His feedings have been compressed to over 2 hours (or maybe an hour and a half--it isn't clear, which is frustrating). He started having more issues with vomiting over the weekend. He will gag and retch and look like he's having trouble breathing while trying to get something out. It wears him out, makes him diaphoretic, and is quite difficult to watch. Today, although the episodes have been more frequent, they are also more like regular spitting up than the retching; I'm not sure if this is an improvement or just a change. On the plus side--he drank another 10mls yesterday.
He's had moments of fussiness, but overall, I think he is getting back to his happy self. He loves being read to from books and made fast friends with Kermit the Frog. He's been having trouble sleeping because his roommate’s vent goes off quite frequently, but the roommate is going home tomorrow, so hopefully, things will quiet down. I am tired, frustrated, and worn out. I don't think we will get out of here this week and I hate that it's not clear where the goalposts are. I have no way to measure how he's doing. Of course, I imagine the same is true for the doctors, but still...
In other news, Mira is off on a big girl road trip with her grandparents to a family reunion which, to me, is amazing. When we were told she would be on so many meds, it never occurred to me that she would be able to take a trip out of state without us being along. It's moments like this that give me hope that things will also improve with Patrick.
He's also doing weird things with his heartbeat. His monitor keeps registering V-tach, but apparently there are "p waves"--although very small--which means it's really a bundle branch block and, given the type of repair he had, not uncommon. They have done multiple EKGs and it's a "sinus rhythm" and they are calling this "normal for him." Yes, this is a lot of jargon, without much explanation; in part, because I don't quite understand it myself. As best I understand it--and I'm not suggesting I do--the electric currents in his heart that make it go are using an alternative route that makes it look like he's getting ready to have a heart attack, but he isn't. [And, in case you're wondering, having become so knowledgeable about so many things, it is frustrating to bump up against things I don't understand.]
