Ok, here’s the scoop….we’re back to not knowing what’s going on, and no surgery date. {Big sigh}
We waited an hour and a half past her appointment time to even be seen, but thankfully Jade did cooperate for the echo-cardiogram, and they were able to get what they needed. Ironically, she seemed to wake up completely cold free this morning – which is the morning she was originally scheduled for surgery.
We were surprised it was just a normal echo – something she’s had done at least three times already, so I’m not sure why they didn’t do a 3-D echo, which is what we thought her cardiologist said they’d do.
Anyway, they came back with the same inconclusive findings that we’ve had with her other echos – Jade has a VSD and may or may not have a pulmonary stenosis (PS). There is a band of muscle in her heart that *could* be a PS, but may not be, depending on where it lies in relation to her VSD.
Sooooo, now they want to do a catheterization to monitor her blood flow and see exactly what is doing what and how much. (Click here for a description of the cardiac catheterization procedure) That will be scheduled sometime in the next two weeks, and will require her to be put under general anesthesia, but it is an outpatient procedure, so she should be able to go home that evening. It’s about 2 hours for the procedure (not including prep) and at least 4 hours of observation, so it’ll probably be at least 8 hours all told.
Now for the fun part…they’ve cancelled her surgery, because this cardiologist just isn’t totally sure she needs it right now and is more of the “only if she really needs it RIGHT now” mentality.
He is not convinced her feeding issues are heart related (as he put it, “some babies just have feeding issues”) and depending on what they find during the catheterization, they may reschedule surgery for a couple weeks past the catheterization or may actually delay surgery as long as till she’s 18 months to 2 years.
This cardiologist indicated that he and our cardiologist had talked, but we’ve somehow gone from “She needs it done anyway, and we might as well get it done before RSV/Flu season” to “she definitely needs it done, but maybe not until she’s 18 months-2 years…we’ll see.”
I also don’t understand why these test were not done before now, if that’s what was needed to know for sure what we need to do. Don’t tell us you’re scheduling surgery until you’ve ordered the tests necessary to make that determination. It’s so frustrating to keep being told she’ll have surgery at such and such a time frame, and then to get our minds (and schedules) wrapped around that time, only to have it change for one reason or another, and then to finally be told, surgery really never should have been scheduled in the first place, because they don’t know the whole story yet. It’s like constantly being put through an emotional ringer over and over.
Alvin said that if we’ve learned anything through all this, it’s that our plans mean nothing. Stuff will change. I think he’s right. I have not the first clue why this stuff keeps changing, and why, but I’m sure God has *some* reason for it.
Meanwhile, we still have a child who just doesn’t eat well, and needs to be constantly fed, pretty much every hour, and all night long, in order to get enough food in her each day, and now it’s going to be that much longer till we find out why. That part is frustrating, because we *thought* we had an answer and an end in sight, and now that’s not the case.
The cardiologist we saw today said he could set up an appointment with a pediatric gastroenterologist, to see if there’s another reason why she might not be eating right, but we decided we might as well wait till after the catheterization procedure, because that should tell us whether or not her heart issues are causing this. If it doesn’t show that her defects are serious enough to cause her eating issues, then we can look at other avenues, and consult a pediatric GI.
We will still be keeping Jade isolated until her catheterization procedure, as we don’t want that to be delayed by another cold or illness. After that, we’ll just have to see when (or if) a surgery is scheduled.
We’ll keep everyone updated.
I don’t even know what to ask folks to pray for – I guess just patience in all of this and for us to have faith that even if we don’t know what the heck is going on, God does.
