Visit with the surgeon

We went to meet the surgeon, Dr. Hanley, who will perform the surgery on Samuel. Dr. Hanley started us out by stating that he had reviewed the latest echo-cardiogram on Samuel and feels that he needs more data to move forward. He thinks there is a slim chance that the surgery is not needed at this time, but to determine that, he wants an MRI done of the heart.

The MRI is a non-invasive procedure that will give him more specifics about what is where in the right ventricle that may need to be removed. He talked about the echo and if we had ever seen one. We've seen many over the years... It's a bit like trying to find a snowman in a snow storm... Ya, I think we all agree on that. We are working to get that scheduled, preferably by the end of this week as per the good doctor.

We asked all of our questions - From the time we let Samuel go to the time we see him in the ICU, should be about 5 hours total. The surgery itself, from first cut to completion will take about 2 hours. He may spend about 2 days/nights in intensive care. Most folks might only need a day in ICU. This extra time is somewhat common in patients with Down syndrome for various reasons. His total time in the hospital may be 4 to 5 days.

Total surgical recovery will be about 6 weeks. He shouldn't be lifting anything heavier than a phone book in that time. This is so that the breast-bone can heal as well as the muscle tissue. That means no swimming, no lifting weights, no basketball. He will need to go for walks and stay fit, so that will be a cool thing to do with him in that time. We'll need to follow his lead for going back to school. He could be out of school the full 6 weeks, but if he feels up to it, he could go back half days after 3 or 4 weeks.

If you've been following along in my reporting, you may get by now that I want data and prefer detail, like the patch they put in his heart. In talking with Dr. Hanley today, I told him that I keep this blog and that I want pictures. I told him that I would like pictures of the tissue they remove from his heart, if he is willing. I told him, heck, I'd like pictures of the surgery if that was possible! Not only is it possible - the dood is going to schedule the hospital photographer to get some. I'll put that stuff up here right after the procedure, I hope. I'm assuming it will be digital, but didn't ask. Not looking the horse in the mouth don't you know...

The interesting part about the conversation was that the doctor had stated that this event, the muscle bundle in his right ventricle, is unexpected in a case of his diagnosis at birth, the Double Outlet, Right Ventricle (DORV). He said that they would typically see something like this in the left ventricle post-facto from that original diagnosis. It's hard to tell if this is just a curiosity, a scientific challenge, or just a "that's weird" kind of thing. I'm not worried about it. I think we were both caught a little off guard by the input. We are coming to learn that this is how doctors like this work. Not a bad thing, just one of those deals you run into and then think about...

Finally, when Samuel was originally diagnosed, one of the doctors that did those original drawings of his heart for us had told us that on a scale of one to ten - where one is a surgery to repair a hole in the heart and a ten would be a heart-lung replacement, the surgery to repair the DORV was about a seven. Fairly complex and challenging. We asked Dr. Hanley where this surgery landed on that scale. He said that this was about a 3 to 4 on that scale. That was good to hear in that it validates the scale for us (listen to us - we're questioning the doctors, right? - not really, just getting confirmation that the scale makes sense and is 'transferable' in context) and also is some amount of comfort that this isn't a seven again or higher.

Other updates: Samuel had another meet last Thursday and did the 50 free and 50 fly again. His free was good, the fly was awesome. He looked strong. Rowena said, "just wait till next year when he should have even better stamina!". Amen to that my love. Amen. His last meet of the season is tomorrow. Rowena donated blood on Tuesday and will probably give again next week.