Connie is doing pretty well today at home. He's been a tad clingy, but not anything like before. He's been walking around the house causing trouble, turning off computers and printers, aggravating Mary Kathleen and playing with toys some. He's hardly laid down at all! I guess pacing him (the lower chambers) at 100 (what Dr. Bromberg did yesterday) definitely helps him feel better and more normal. He didn't eat anything at breakfast, but did have a whole scrambled egg an hour later and then some cheez-its and yogurt for lunch (he passed on the applesauce, blueberries and hot dog). His diaper from overnight was bone dry, which surprised and worried me. He had a whole cup of water last night during the parish mission and then afterward he drank almost a whole cup of fruit punch.
I've put in a call to Dr. Bromberg to clarify some questions we have about the pacemaker and we've requested that his records from these last two flutter episodes be sent to the EP in Michigan, Dr. MacDonald Dick. The only reason for this is that we wonder if he might benefit from a new pacemaker since this one appears to be "not working properly". If that were the case, we would consider going back to Michigan for the surgery. I've also requested that Dr. VanHare, the EP at Children's who will be doing the procedure on Thursday, call me at his earliest convenience so that we can discuss these questions, as well as the long term plan for Conway regarding his rhythm issues.
Walgreens can't make the Amiodarone until Friday so St. John's pharmacy is now the place to go. I'm waiting to hear back from the compounding specialist there.
Other than that, not a whole lot has changed. We are just thankful that he is eating some (and keeping it down) and that he seems more comfortable today. Thank you for praying--don't stop!
Pics from the weekend. . .you can see that he was just not his usual smiley self.