My 7 year old son was born with Pulmonary Atresia. He has an occluded BT shunt and as of his last cardiac MRI, his heart function is fair. Last Friday, he was experiencing a resting pulse of between 120 and 146, was flushed in the face and had purple feet. By the dinner time, he was back down to his normal range (between 80 and 90) and they released him from the ER with a halter monitor for 24 hours. Today, we were told they found some PVCs although they didn't say how many or how often. They added an EKG to his appointment next week on top of the echo that we scheduled yesterday. I already know they are talking about implanting a pulmonary valve in the next 18months or so. Do you think that they are going to have to do the surgery faster now that there are PVCs? Are there certain questions I should be asking to make sure he is ok? Is he going to be ok?
Without evaluating him, I certainly cannot tell you whether his valve placement needs to be done sooner or whether he is going to be okay. The type, number, and frequency of the PVCs is most important in predicting whether they are benign or not. If he has more than 1400/day, this may be considered higher than normal. If he has PVCs that are multiform, or arise from multiple areas, this may be abnormal. Certainly, if he has runs of PVCs (i.e. 3, or more, in a row), this is definitely abnormal. If his oxygen saturations are normal and his heart function is reasonable, this may not necessarily mean that his surgery needs to be earlier.
That said, it's going to happen sooner or later, so it may be time for you to start to get prepared for it. You've already been through a surgery with him, and you've seen how he's done. If you are at a center with excellent outcomes and his branch pulmonary arteries are of good size, he should likely do well. It certainly is scary knowing that your son will have to have AT LEAST one surgery coming up, and will likely need more intervention of some kind in the future. It can help to talk with other parents/families about their experiences; there are several websites and groups devoted to supporting pediatric and congenital heart patients and families. Also, talk with your cardiologist and get answers to any questions. You need to be comfortable with what is happening with your son. If you don't have that comfort level with the care team, then you should consider a second opinion.
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