It's all structural

The thing about having a scientist in the family is that their matter of fact outlook on life can actually be comforting. When Tiernan was first diagnosed, and we were all "freaxious" (that's fear+dread+anxiety+nausea, according to an fb friend and fellow heart mom), my brother-in-law, Blake, a wildlife ecologist, said, "It's all structural." This allowed me for a moment, however brief, to step back and see that while my son's heart was very much imperfect, it was structural, and given the right surgeon and procedures, they could re-structure that little heart. Of course then "freaxia" set right back in, but it has been helpful many times for me to say those words to myself.

So I thought I would post some of the wonderful diagrams Dr. Obayashi, one of our amazing cardiologists at NW Children's Heart Care, drew for us while in the hospital. There were several more with all the measurements and pressures from his 2 heart caths, but I will not include those. These have been extremely helpful to us and to all his nurses and doctors during his stay.

First, it may be helpful to look at a diagram of a healthy heart, if, like me, you are a bit rusty on your heart anatomy. Even now I feel like more of an expert on Tiernan's unique heart than a normal one. If you want to do this, you will have to go to childrensheartinstitute.org and find the bloodflow diagram to do this because I have not yet learned how to do a link on this blog. Apparently it is more difficult than I thought.

Tiernan's official diagnosis, though written by Dr. Obayashi at the top is difficult to read on here. So this diagram shows the following:
*Unbalanced (right dominant) complete atrioventricular septal defect (the big hole in the middle of everything)
*Hypoplastic aortic arch (hypoplastic means small or underdeveloped)
*Coarctation of the aorta (narrowing of the arch)
*Patent ductus arteriosus (the small connection between the pulmonary artery and aorta)



His first surgery took place on September 3rd (my birthday) at Seattle Childrens Hospital by Dr. Cohen and Dr. Permut. They reconstructed the arch with pericardium (sac around the heart) tissue. They placed a band on the Pulmonary Artery (PA Band) to restrict the flow to the lungs. Finally they tied off the PDA so the PA was no longer directly connected to the arch.



His 2nd surgery took place on Christmas Eve at Mary Bridge Childrens Hospital in Tacoma by Dr. Woods and a surgeon from Portland who came up just to assist because Woods insisted on having his best possible team on the case. This diagram also shows that Dr. Stefanelli had to balloon his coarctation because it had re-narrowed to only around 1 mm in diameter. Note how much thicker the ventricular walls had become due to the double obstruction-the PA band plus the re-narrowed coarct. In this surgery:
a) Damus-Kaye-Stansel or DKS (combine the PA and Aorta so they both exit the heart and go to the body, not the lungs)
b) Bidirectional Glenn (disconnected the Superior Vena Cava (to the left of the heart) so it now flows directly into the PA and flows passively (not pumped by the heart) into the lungs.
c) Aortic arch angioplasty
d) Removal of PA band



We do not know what his next surgery will be or when it will take place. For now we are very pleased with his recovery and prognosis. He has oxygen saturations in the mid 80s for the most part. We have a cardiology appointment this Friday and hopfully the echo will not show that darn coarctation even more narrow than last time.

Tomorrow we go into the OR though for the wound exploration to get that little stitch that refused to dissolve as it should. So look at the tiny red dot to the left of his Mic-Key button. Look closely. THAT is what is causing all of this commotion. Pray we don't get stuck overnight for some strange reason. But if we do, we'll just party with all his girlfriends. (the nurses)



And just because he is so stinkin' adorable...