Monday, May 21, 2012

Cardiology appointment: Good-byes and Good news

It is a strange phenomenon to leave a cardiology appointment teary-eyed, though you just heard your son's heart function is perfect. But that's what happened Friday. We got great news, but we had to say a hard goodbye to our beloved Dr. Stefanelli. Honolulu is greatly benefiting, I'll tell you that much.

We spent a long time with Dr. S. on Friday talking. About Luke, the Fontan, and the plan of care moving forward. First things first, Luke's heart checked out beautifully on echo. I believe the words Dr. S. used are "snappy" and "perfect" in relation to his left ventricular function (his only ventricle, or pumping chamber). Dr. S. continues to push the boundaries of the medical standard for the timing of the Fontan, but with great heart function, no tricuspid valve leakage, and sat's at 85%, he continues to champion waiting as long as possible for Luke's next surgery.

Of course we ask the question, "Is it possible that Luke may never need the Fontan?" He's not willing to go that far, believing that Luke's sat's will start to trend down at some point and his energy will lag, but that could be a couple of years away. We will just continue to wait and watch and pray. With a "one in a billion heart", we are at that place that continually grows our faith: Waiting.

We will transition our care to Dr. Kim, a partner of Dr. Stefanelli's. We have a brief history with him, as he was on call the day after Luke was born. He performed daily echo's on Luke for a few days until Dr. Stefanelli came back into town. Dr. Stefanelli has the utmost confidence in him and we all agree Luke will be in good hands.

Luke was such a trouper at this appointment. We talked with Dr. S. for so long in a fairly small room, and Luke did so good occupying himself. He also was a stud about the EKG stickers and was happy to watch Wild Kratts during the echo.

We love you to pieces, Jodi!

Readin' his BOB books during the exam.
Luke's coarctation of his aortic arch is looking good and we are hopefully at least a year away from having to balloon that again. Eventually, Luke will most likely have a permanent stent put in there.

Luke's surgeon at Seattle Children's is also moving, so we talked a bit about surgical options. If Luke were to need the Fontan right now or in the next year, we would most likely be encouraged to go to Stanford. However, all of that is so up in the air as we wait and see who Seattle recruits to replace Dr. Cohen.

We spent the drive home processing our time at the doctor's, but like always, life calls you to move forward. We had a t-ball game to get this boy to!

Thank you, everyone, for your thoughts and prayers for our little man. We feel carried by you.

1 comment:

  1. So glad to hear he's doing well. I'm in Hawaii, with a heart baby too, due to a change in insurance we may need to change cardiologists. Do you know where your Dr is going?