Well, just got back from seeing Dr. Albrecht. Jade’s pressures look ok in the right ventricle. I think the peak was 65 mm Hg. He thinks the elevation last time (mean of about 50 mm Hg, peak of 85 mm Hg) was due to her pitching a fit at the time. She did a lot better this time, with the crying. She even stayed still for most of the EKG and Echo, with only a little fussing. She thought his mustache was hysterical this time around.
Anyway, I asked him about the pulmonary stenosis, and he said they may never truly know whether she has one until they either repair the VSD, or it completely closes, because right now the turbulence caused by the VSD (Ventricular Septal Defect) combined with the abnormal muscle bundles forming the DCRV (Double Chambered Right Ventricle) kind of mimic the turbulence across the valve you’d see with a PS. His thought is she probably does have a mild PS, but it’s not of consequence right now.
The valves all look good – especially the aortic which is their primary concern, due to the VSD blood jet pointing right at it. So that’s good. No change in the VSD, but it’s small enough that it’s not affecting her health.
But they’ve changed their tune a little bit on the muscle bundles and surgery. Previously I got the impression it was a “wait and see” and “only if the pressure’s get too elevated in the right ventricle.” Now he’s saying it’s really inevitable, that they’d eventually need to be removed, to prevent problems, and that they’d probably most likely want to do it before she hits school age, since it has to be done anyway. That way we wouldn’t ever have to worry about taking her out of school for the surgery and recovery. Makes sense. One less thing to worry about.
Apparently this isn’t something they like to wait until it’s a big problem. If it were to become a problem, of course, they’d do surgery immediately. And they usually like to wait until the infant gets a little more size to them, but, now that it’s obvious she’s not going to “bulk up,” there’s no sense waiting too long to have it done. She’s tiny, and likely to stay that way, now that we know it’s not heart related.
Not exactly what we wanted to hear, but we were resigned to her probably needing surgery at some point, so this is not shocking or alarming. Just likely to be a bit sooner that we thought. He mentioned possibly this spring, maybe a year, or year and a half down the road. So I’m guessing, definitely by the time she’s 4, and quite possibly sometime in the next year.
My guess is they’d probably repair the VSD while they’re in there. I mean, why wouldn’t you? If they’ve got her chest open, might as well fix it all, right?
He says he has a consultation with the pediatric cardiothoracic surgeon at UVA – probably Dr. Peeler, the one that was to do her original (cancelled) surgery – after each appointment, to get his take on how she’s doing and when he thinks might be a good time to go ahead and do the surgery. And so Dr. Albrecht wants to see her in another 6 months, to make sure nothing has changed, and update us as to anything the surgeon might have had to say.
So unless the surgeon wants to do it right away, for some reason, we’ll just wait to see what we hear at the next appointment in June.
In other, more upbeat news, Jade is officially done with food allergies! So that’s definitely a blessing and cause for praise!
