Time has flown by. I can't believe it's been six months since we last saw our friends at Mercy Children's Heart Center. The whole staff couldn't get over how great Connie looked and how grown up he appears now. It must be the spiky, gelled hair-do. Conway went in late Thursday afternoon after waiting all week. I had told him about the appointment on the Sunday prior and he squealed with delight and asked/reminded me every day leading up about the visit. He happily went through all the assessments and answered questions when asked. It's fun to see them involve him more in his care now that he's older. I can only imagine how I'll feel when he's a teenager and they'll discuss it all with him and I'll merely be a spectator.
His pacemaker report showed that he's got about six years of battery life left on his current generator. This is great news! I am not sure without going back and looking at old posts, but I think the last time this was checked it showed 4.5 years. That means it's added energy! Dr. Bromberg commented that he's never seen one go down this slowly before. How awesome is that?!
After his echo was reviewed, we learned that there has been no change since the last one. He still has leaky valves and obstruction/narrowing through the RV-PA conduit, but it hasn't worsened and it's well tolerated at this point (no RV or LV dilation, no symptoms). His tricuspid valve is the leakiest, but since his anatomy is so weird, it's actually in the pulmonary circulation and therefore doesn't affect his heart function much. The trouble with it being in the pulmonary circulation is that his conduit is obstructed as well. In essence, he's pumping against obstruction AND the blood is regurgitating back through the leaky valve, further limiting flow into the lungs and creating more work for his RV.
At this point, we are barely increasing his two heart meds, Enalapril and Aldactizide (just to keep the dose accurate for his current weight). We'd like to eventually take him off of the diuretic since we're not convinced he needs it, but the last time we tried that he gained a few pounds rather quickly due to water retention. Needless to say it's not worth it to us to risk that again. Why mess with it if it's working, right?! We'll send in a pacer check over the phone again in three months and he'll be seen again in the office in 6 mos just to keep an eye on that conduit. Maybe Connie will be one of those lucky kids whose conduit that was placed in infancy lasts until he's 8 or 10 years old. Wouldn't that be amazing? We were first told that it would last him anywhere from 3 months to 3 years. It's already been 4 years and Dr. Bromberg told us it could be YEARS before it needs replacing.
We went over lots of issues, including development and diet. Dr. Bromberg is amazed at his speech/language and cognitive abilities given what he's been through. Connie was disappointed to hear that he needs to lay off the hot sauce, but he's been a trooper about it and hasn't had a drop since the appointment because "Dr. Bromberg said too much hot sauce is not good for my heart." (it's loaded with sodium... plus, it's just weird for a kid to eat hot sauce with every meal/snack).
Thanks to everyone who continues to pray for our boy. He brings us such joy (most of the time) and is a living testament to God's grace, mercy and miraculous power! We are so grateful he is doing so well today and ask for prayers for continued good health and happiness.