If the surgeons feel that such a surgery would be too risky to justify the possible outcome, they may deny surgery as an option. Remember that the veins they'd be operating on are 2mm in diameter. The veins are shown in the x-rays below, which were taken during the cardiac catheterization (the catheter is the long, thin tube in the pictures):
Road #1:If the surgeons deny that surgery is an option then we'll have no option (aside from a miracle) to repair Roscoe's pulmonary vein stenosis. Without a possible repair, we'd basically be forced to watch Roscoe wait out his remaining days on a ventilator until no amount of breathing support will keep him alive or until his heart fails from the strain. We'd be able to get rid of all of Roscoe's IVs and probably most of the monitors, so that we could just spend quality time with him. We're not yet sure how much time he'd have, since it would all depend on how much they could get his pulmonary hypertension to stop flaring up. This would be a difficult road to travel, especially knowing that we had no other choice.
If the surgeons agree that surgery is an option, then Alisha and I will have a talk with the pulmonary hypertension team (along with the surgeons) about the probability of various outcomes. The first question would be Roscoe's chances of making it through the surgery alive (his hypertension flare up during the cardiac catheterization causes some doubt). If he did make it through the surgery alive, Roscoe would be hooked up to a life support machine that would keep his heart beating and lungs functioning. They said that he might be on such a machine for up to 3 days, and could also die during that process. If Roscoe survived to that point, he'd need to heal from open heart surgery. Once that happened, his pulmonary vein stenosis would be at least temporarily repaired so they could much more aggressively treat his chronic lung disease with medications that are not possible with his current narrowed pulmonary vein.
One of the pulmonary hypertension experts drew this picture on a whiteboard to explain the three pathways by which pulmonary hypertension can be medically treated (ie: drugs). To summarize, he showed us how nitric oxide and sildenafil cause the body to dilate blood vessels (good), a newer drug called remodulin also causes the blood vessels to dilate, and how bostentan (which Roscoe is already taking) blocks a chemical that causes blood vessels to constrict. They said that if Roscoe survives the surgery, he will be started on remodulin in addition to bosentan. The remodulin would be taken subcutaneously, like an insulin pump would be used to treat diabetes. This would be yet another machine that Roscoe would be hooked up to that he could go home on. He'd stay at UCSF while he's started on this new drug. Roscoe would continue to have periodic checkups at UCSF to check for scarring/re-narrowing in his pulmonary veins, most likely for many years to come.
So there you have it. We'll either go down a road where we watch our son slowly fade away, or where he barely survives and gets hooked up to more machines and monitored more heavily. At this point, we don't know which road will be taken but we know it will be hard. The prayerful support from you all gives us the energy to continue down such a road, and hopefully the answer to those prayers from God will bring our son safely home.