Just got back from the cardiologist and the story has changed a little bit.
Jade did finally make it to 10 lbs, which is good. That means she’s gained 6 oz in two weeks, so I do think the Zantac is working, and Dr. Albrecht is pleased with the weight gain.
Also, her oxygen saturation was *excellent* – 100%.
Dr. Albrecht said that given that her oxygen saturation was only 92% last time, he fully expected her to be in the 80’s this time, because that’s typically what happens, which is why he was thinking surgery this fall. He was so convinced it would be lower, in fact, that he had a copy of her chart ready to send to a surgeon after today’s visit. However he was surprised that it’s back up to 100%. So, now he thinks we can hold off a little longer on surgery. How long, he doesn’t know, because there’s no question she does need it at some point, but he said as long as she’s gaining weight and her oxygen levels are good, he said there’s no need to rush to surgery.
He said we’ll see how she’s doing next month (September 5th) and play it by ear.
I did verify that when she does end up having surgery, it will be at UVA (MCV no longer does pediatric cardiothoracic surgery), and that she will require open heart surgery. He said the catheterization procedures are really reserved for those infants/babies that have already had heart surgery (and they don’t want to open their chests again if they don’t need to) and/or those children for whom their defect is in a difficult to reach spot.
Since Jade is in excellent health so far, and has a fairly straightforward repair needed, as well as it only probably needing to be done once, they will go ahead and perform open heart surgery, since she should tolerate it just fine.
Also, he said her VSD is opened in such a way that the catheterization procedure and using the occluder to close the hole wouldn’t be ideal. Usually the edges of the hole are all in a plane, but one side of the hole is set a little back from the other side of the hole – almost like a circle that’s been bent instead of flat.
So that’s where we stand – a couple questions answered, but apparently still more watching and waiting ahead.
Of course I’m happy to hear she’s doing well, and not getting worse, but at the same time I’m a little disappointed and frustrated to have surgery put off, as odd as that may sound, because although we know she’ll need surgery, we don’t know when and just have to sit and wait longer to find out when. I had my mind all wrapped around September or October, which at least gave us some sort of end in sight.
Also, the thrush isn’t likely to go away until after the surgery, so it’ll be that much longer that we’re dealing with that, and all that goes with it (irritability, medicines, supplements, diet…).
So I guess we’ll just have to see what September brings.
