February 13, 2024

We met with the surgeon today. What I thought was going to be a complex, but otherwise a normal Norwood surgery is in fact not quite that. (Here’s another link detailing the procedure, and this one also briefly mentions the pulmonary artery bands and stents David has.) They had hoped to skip doing the Norwood by itself and that they would be able to do a comprehensive stage 2 when he was slightly older, but with his vein stenosis, they had to take a step back and do it by itself. The comprehensive surgery wouldn’t have required the shunts, but the Norwood does, and the Norwood is typically done on newborns. David is not newborn size anymore, which poses a little bit of a dilemma with the shunts. They always place a 3.5mm shunt in a newborn; however, that may be too small for David. Does he need a 4mm? 4.5mm? The surgeon doesn’t know. The one good thing is there is a new material that was recently FDA approved that can be ballooned to a larger size, so they are going to try that and the cath team will be on hand if they need to balloon it. 

The statistics are sobering. We are hopeful David is on the good side of all the statistics. The Norwood has gotten better and better through the years, but the surgeon’s largest concern resides with the pulmonary vein stenosis. If David does in fact have a disease that is causing that narrowing, there’s a 10% chance it comes back in 1 year, 30% in 3 years, and 50% in 5 years. They will monitor him very closely for that condition. It is unknown if perhaps the narrowing is caused by his stent. Or did they catch the disease very early since it is only in 1 of the 4 veins at this point. We don’t know. 

David will go back early in the morning. The surgeon mentioned that performing the Norwood will likely take 5-6 hours, but surgery could take longer depending on what they find while in there that they want to address. Will there be an intervention on the tricuspid valve? What about the pulmonary vein? The tricuspid valve is another thing that if he fixes it now, there is a good chance of it coming back. After the surgery, David will go to the CVICU. He’ll remain intubated and his chest not closed up. As the swelling goes down, then they will close up his chest – but it will likely take a couple days before that happens. The first 24-48 hours post-surgery are critical. The further we get away from surgery, the better he should do. There is a 10% chance he will come out of surgery on ECMO which is the highest form of life-support that they can provide. The surgeon also reminded us that recovery from the Norwood is measured in weeks and not days. However, if all goes well, it should buy us 4-6 months before he needs the next surgery (the Glenn).

Eli and Anna came to visit tonight. We celebrated Valentine’s Day because we’ll likely hardly see them tomorrow. Maybe by the weekend they can see David again.  

Tonight we will try to rest and send up many prayers for David and his medical team.