Monday, March 23, 2009

The Waiting Game...

What we thought would be a fairly routine visit to the cardiologist last Monday, turned out to be yet another twist in Lucas' heart journey. Lucas has what's known as an atrial septum defect (ASD) which is a hole between the upper chambers of his heart. Because there is no place to anchor a device (which would be a much less invasive, simple procedure), for the past year we've been told Lucas will require open heart surgery.

During the ultrasound, the cardiologist and the tech agreed the hole is tiny. So tiny, in fact, that Dr. Pereira, who has been following Lucas since birth, wants Lucas to have a sedated echocardiogram on May 7th. She will then present Lucas' case again to the review committee (cardiologists and surgeons at Miami Children's) before moving forward with surgery on June 5th. Dr. Pereira hasn't encountered a case like this and is now unsure whether surgery will be required to repair the 2 mm hole (a little more than 1/16 inch). As she put it, if the hole was anywhere else in his heart, he wouldn't ever need surgery. She is now favoring a "wait and see" approach.

As she explained it, typically, an ASD causes "overflow volume" to the right side of the heart which makes it swell and can lead to arrhythmia and pulmonary hypertension. However, in Lucas' case, the ASD doesn't seem to be affecting his heart's function at all. Because of the location, the hole won't close on its own either.

Our plans remain unchanged -- I've requested a two week leave from work and Tom's mom is visiting from Seattle to be here as well. Although we'd so much prefer not to face open heart surgery, we also want to make sure whatever decision we make is in Lucas' best interest. If we're putting off the inevitable, then we'd want to move forward as planned. Even if surgery is the "right" answer, is now the "right" time?

1 comment:

jennifergg said...

Everything you write here coincides with all the info we heard about ASD with Avery. His hole was very big, and there were signs of stress in the ventricles.

Several times I heard the phrase "We often don't operate on these sorts of defects" because the pressures between the upper chambers are very similar, which I suppose means there isn't as much stress as with other kinds of holes.

Too, we'd also hoped for a catheterization, but in our case OHS was the best option, and now, after having been through it, I can say that it was truly the best option. The hole was bigger than the ultrasound indicated.

So? I will keep a good thought that the right answer makes itself clear for you--but know this: it's good that you have so many really excellent choices.

Thinking of you all...

xo