We headed to Philly yesterday for an appointment this morning with pulmonology. We went through a whole bunch of medical history with the pulmonologist, then began discussing the upcoming pulmonary functioning test. Our ENT was adamant that we have the test done in the OR in case something went wrong and she needed to be intubated. This pulmonologist wasn't able to do that, so we decided to have Abby do the test awake. It may not be the most accurate the first time, but we figure we'll try and at the very least she'll start to get used to it...she'll be doing them the rest of her life!
This pulmonologist shared his perspective on having the VEPTR surgery, so it ended up being a "bigger" appointment than we anticipated. From his standpoint, he feels that doing the surgery before the breathing becomes an issue is better. He explained that once she starts to lose her pulmonary functioning, she most likely won't get it back. This makes sense, and we agree with being proactive. But then he started talking about doing the surgery within the next year, and I'm pretty sure I started hyperventilating a bit! The amazing Dr. Campbell (the inventor of the VEPTR) will have the final say, and as this pulmonologist said, "When Dr. Campbell says it's time, you know it's time!"
So, we will go back in February for another CT scan, more xrays, a pulmonary functioning test, appointments with pulmonology and orthopedics, and most likely a dynamic MRI. My guess is that with all of these tests and appointments, we will probably have to spend two days at the hospital this time.
These appointments seem to always be a lot to take in. Whenever we talk VEPTR surgery, I get nervous. This is a HUGE surgery (well, we're talking one HUGE surgery, and probably 20+ smaller surgeries to expand the ribs every 6 months until the rib cage is done growing.) It's not something we take lightly.
But, I also know that we are in the best possible hands. Dr. Campbell created the VEPTR and is the leading expert on thoracic insufficiency syndrome. So if he feels we need to do it, then we'll begin to move forward. I guess we will see in February what he says!
We obviously covet and appreciate your prayers during this entire process!