Crew Wesley Miller: Six Pounds, Eight Ounces Today!

Where do I start? First, I'd like to mention that my sister (Crew's mother) . . . I won't mention any names . . . is still avoiding me when I try to teach her how to take over this blog. She conveniently avoids me or simply ignores me when I try to show her how to do it. So, when the blog is not updated daily . . . you can blame it on her. By the way, I warned her that I was going to Rat her out.

So, Crew was started on the combination of Flecainide and Sotalol Wednesday night. Thursday he had a bad day . . . as I reported in the last post. Well, Friday we had no SVTs!! Hurray!! Wait . . . did we dare to celebrate this wondrous occasion out loud??? He actually went about 32ish hours without any SVT. We thought for sure that we'd finally found the recipe for him. However, Thursday night . . . according to his nurse . . . he was very fussy and restless. Then, Friday he continued on with this same behavior. He just wasn't acting himself at all. He started having a lot of apnea spells and dropping his heart rate. He also seemed to lose his appetite. We were worried that the Sotalol was causing an upset stomach and increased heartburn. Or perhaps even worse, maybe he was getting sick. The doctors ran some lab work and did x-rays just to make sure . . . nothing looked too concerning. They also gave him another bolus of Caffeine. By late Friday afternoon he was back on the Oxygen. So, no SVTs that day, but a little boy who just didn't act right. By bedtime Friday evening he was eating better and his "spells" had subsided greatly. We're hoping that all the fussiness was just from a "gassy" belly.

Then Saturday mid-morning, things started up again. He had about 7 SVT episodes throughout the day. On the positive side, he only had to receive Adenosine once . . . the other 6 episodes converted with vagal maneuvers. Seriously, are we ever going to figure this out?? His mom was completely beat by the end of the day. So, now he's having SVTs but acting more like himself . . . what? They increased his Flecainide again.

Today, I'm afraid to even report how well it went. It seems like whenever we celebrate things, he has a set-back. That . . . ladies and gentlemen . . . is the roller coaster ride of the NICU. He only had one SVT episode late morning, and converted himself while breastfeeding. He came off his Oxygen during the night shift last night and was did well all day. He is now on a maintenance dose of Caffeine . . . getting it daily. His periodic breathing is way better and he's having just a few minor "spells". Because of the events of Saturday, the Cardiologist decided to also increase his Sotalol. He weighs 6 pounds 8 ounces today. He's back to his "smiley" self and eating like a horse. Can we shoot for maybe 3 or 4 days without SVT please . . . or perhaps even forever???