Cardiology Update

We went for a visit with Dr Stock (Cardiology) today. Owen's appointment was originally scheduled for June 21st, but we bumped it up a couple weeks. Even though Owen has been more energetic lately, I can't forget how crummy he felt a couple weeks ago.
Owen's weight is up... 29.06 lbs and 36" tall. We didn't take his blood pressure, but I'm going to guess it was 70/40 like it was last time. Low. Nothing too concerning. We talked about our visit to Stanford, transplant, and increasing his medications. Dr Rosenthal (from LPCH) wants us to go up on his medications, based on his weight increase. The new doses are insane!!! He is already on 60mg of Captopril a day and based on his size, he would need to be on 75mg a day!! Also, we need to increase his Carvedilol (beta blocker) to 6.5mg a day, which is also a very hefty dose of a strong medication. I guess if they're keeping him stable... what choice do we have. We all have the same goal... keep him stable and growing.
I was having a Mommy downer day and Dr Stock listened and was encouraging. We had a long talk. We talked about how he exhausts, can't eat, can't walk, can't keep up with other kiddos his age. Dr Stock reminded me that's all he has ever known and not to compare him to a healthy toddler. We talked about transplant and the benefits of keeping him and his heart working together a long as possible. We discussed signs that Owen would show when he's ready to be listed. Lowering saturations (that won't increase with added oxygen), exhaustion, irritability, lowered heart function, ect. We talked about the Fontan and if Owen had been a candidate, we would be planning his surgery for early fall. Neither of us know when Owen will need a new heart, but agreed that the cath in October will be a pretty big indicator of what's to come.
I keep reminding myself that this is all out of my hands. There is a plan for Owen and I just need to have faith that it will all work out. I am amazed at how well he continues to do, despite the odds against him. I can't imagine what it's like to have so little energy to walk, or eat. I worry that he's not living a great quality of life. Then I look at the silver lining...

It's his life, and it's all he knows. He is so happy. What may seem weird to others is normal to him. He lifts his shirt for feeds (every 30 minutes throughout the day) and says thank you when I'm done. He gets excited when the UPS man brings his delivery of formula and supplies. He gives knuckles to the oxygen delivery man. He loves his therapists that come and play with him, even when he doesn't cooperate. He doesn't mind the countless doctors visits. He lives life the best way he knows how.
I wrote this post last night. This morning when Daddy was leaving for work, he accidentally kissed Owen on the nose. "Daddy -- my -- nose!" I knew what he meant. He has been giving Eskimo kisses to me and Sis all morning since, each time with a small giggle. I'm in love!!