Thursday, February 12, 2009

Cardio Update

Before I get to the real news: Our power came back on around 9 am, right before we left for the appointment, but when we got home around 2 pm, they still had roads closed, repairing downed wires just up from us on the big road that we live about a block off of. It seems a fallen tree was involved, as well.

Now, to the important stuff: Peeper had another echocardiogram today, and it did not go as well as we had hoped.

The atrial septal defect (ASD - the one that's less of a concern) is smaller than it's been, and the ventricular septal defect (VSD - the one that we are worried about) is a bit smaller than last time, but is not changing as quickly as the cardiologist would like to see.

The pressure gradient between her lungs and left ventricle has also increased (which we want) but also not as much as he'd like to see, and not enough to say that her lungs are no longer in danger of sustaining long-term damage from the high pressure (if it's allowed to continue).

So, he will be sending her chart and a tape of her echo off to the surgeon to review.

Actually, it will be a team of surgeons and pediatric cardiologists, about a dozen in all, who weigh in on what to do.

It's possible that they will want to watch it a bit longer and see if it improves enough on its own, but it sounds more likely that she will be having open-heart surgery to correct both defects, probably in about a month.

The surgical team reviews cases on Tuesdays, but he didn't know if they'll get to her next week or the following week. He should be able to find out and let us know, though.

If they recommend surgery, we'll then meet with the surgeon to discuss the details, set a date, and such, and Peeper would probably have her pre-op bloodwork and be checked out by the anestheiologist, all at the same time.

The other concerning thing from today's appointment is that he didn't seem as happy as usual with her weight gain, but I am a bit suspicious of the measurement.

In the past, we've had back-to-back appointments with him and the pediatrician that have shown quite different weight gains, so I never really trust his scale.

Today, it showed that she had gained only about seven ounces over twenty-two days, whereas two weeks ago, the pediatrician's scale showed a seventeen ounce gain in the same length of time.

So, either the scale is funky, or she has really slowed down her growth dramatically in the past couple of weeks.

During that time, she certainly seems bigger, and other than sleeping longer between meals during the night, her nursing behavior doesn't seem to have changed significantly, so I'm a> mostly suspicious but also b> a little concerned.

Typically, the first words out of his mouth when he comes in the exam room are "Looks like she's growing!" but today they were, "Has she started on any cereal yet? Have they (our pediatricians) said anything about it? Maybe its time to start talking about it."

What the fuck? She's fifteen weeks old. (Eleven, really!)

So, on the way home I called and got her an appointment for a weight check at the pediatrician's office, where we will either be reassured or will discuss why she's slowed down and what to do about it.

In other news, Peeper will be going out to dinner with us on Sunday, I will train with Learning Center Online before surgery, but not start until after, and so the bottle issue seems to be on hold for the moment.

It's hard to be too glad about that, given the reason, though.

So, we wait to hear back from the surgeon in a week or two, and have an appointment scheduled with the cardiologist in three weeks - unless we're starting to prepre for surgery by then.

And, once again, I will ask that you keep us all in your thoughts and prayers, and send us whatever good vibes, positive energy and no-surgery-mojo that you've got available.

1 comment:

  1. Anonymama had already filled me in, of course you are all in our prayers.

    As to the cereal comment, the official recommendations say 4 to 6 months, so, if she really were 15 weeks (instead of really 11) it would be getting close to the minimum time.

    By the time surgery (if she has it) is over, she recovers, and you actually do start working with the Learning Center Online, you might be able to start a little cereal, rather than deal with bottles.

    It could be better to start solids on the earlier side of the curve and deal less with the bottles...


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