smacky and bucky

Well, since Laura started a secret FB group to update family and friends about it, I can post it here:

On Tuesday, we popped into Henry's pediatric cardiologist's office to make a follow up appointment that would have been due in June. His amazing doctor, Dr. [X] fit us in right after the patient he was with.

We went straight to the echocardiogram. This was Henry's third visit to Dr. [X]. The two previous echoes showed a heart murmur. The second one indicated his heart was somewhat enlarged. We'd been encouraged to come back in a year. Yesterday, Henry stretched out lying on his Dad's chest watching "Thomas the Tank Engine" and Dr. [X] was able to get the best look yet at Henry's heart.

Dr. [X] is the most soothing specialist you can imagine. During our first exam he talked quietly and kept saying reassuring things as he checked each area. Yesterday though, he calmly said, "This is freaking me out a little bit." We waited as he continued the exam. He got the exact pictures he wanted and then he took out his model heart and began to explain to us what is going on.

Henry has ASD (Atrial Septal Defect) Sinus Venosus. He also has one or more pulmonary veins that are routed to the wrong part of the heart. What this means is that his heart is recycling a bunch of blood and working quite hard to do so. He is not in any pain or immediate danger. However Dr. [X] said that open heart surgery is required.

The good news is that once the repair has been made, the heart will be "good as new" and Henry can live a totally normal, long life. I finally had the courage to Google the condition today and found these words very reassuring, "Excellent surgical results with a mortality rate near 0% can be expected. This is particularly true in patients who undergo repair when younger than 15 years. [First repaired]... in 1954 ... at the Mayo Clinic. "

So that's our news. Out 16 month old is probably going to have open heart surgery in the next six months. It's scary as hell to think about, but the success rate is amazing, and I think about all the things it could have been, and we're really fortunate. He doesn't need a transplant so we're not waiting on a donor or risking rejection of an organ; it's not something that could be fixed and recur later like cancer; and it's something that can be fixed and he can have no memory of going through it at this point.

I'll update here as news comes and things happen, but I'm still going to be posting goofy shit, because lord knows I'm going to need some goofy distractions now and then. For instance, De showed me that there is a Cobra figure that is a zombie!

Labels: Heart