Heart Catheterization Update

This is Aaron talking (Erica is feeling sick and trying to take care of YouYou)...

YouYou's heart catheterization went smoothly and the Drs. were able to get the information they wanted. We are currently about 3 hours into a 6 hour observation period and trying to keep YouYou as still as possible (yeah, its not working really well).

So what's the way forward? Dr. Romp stopped by about an hour after the cathe and discussed with us what they had seen. First a little background on why they were doing the cathe. VSD (a hole in the heart) increases the pressure at which the heart pumps blood into the lungs. Normally this is corrected in the US before a child is 8 months old to prevent permanent damage to the lungs. Damage occurs because the elevated pressures cause the capillaries (tiny blood vessels) in the lungs to build up scar tissue. Too much scar tissue means the blood is not picking up the oxygen it needs from the lungs. If the damage is severe enough and because it is irreversible, your options are very limited - ie lung transplant.

So how does the cathe help us know what to do? The cathe measures pressures in different areas around the heart, so it can tell how much pressure is going into the lungs as well as the resistance the lungs are putting up. It is the resistance that is the key, the more resistance the more damage. So the Drs. first measured the pressure YouYou's heart was placing on her lungs as well as the resistance to that pressure from the lungs. Both the pressure and the resistance were elevated which is not what we (us/the Drs) wanted to see, but it is what the Drs had expected. A second test they do is they give YouYou medicine that reduces the pressure from her heart to see if the lungs will then also lessen their resistance which they did. This was a positive sign. If the lungs had not changed their resistance we would be talking about the limited options mentioned above. As it is, the Drs. will be discussing this Friday exactly what they want to do next Wednesday.

So what are the options for Wednesday? The most invasive, complex option would be to do open heart surgery, close the VSD and do a double switch at the same time to try and address her ventricle inversion as well. Dr. Romp is not in favor of this one (and frankly neither are we), he feels that we need to first address the potential threat to the lungs and get that situation stabilized first. Then down the road we will address the ventricle inversion. The second option is to do open heart surgery and just correct the VSD. This is not a small operation either. It is open heart surgery, her heart will be bypassed and she will be on a ventilator. If all goes well this should help stabilize the pressue in her heart and there is a chance that the damage that has been done to her lungs will correct itself over time. The final option is the least invasive, they would put a band around the Pulmonary artery which pumps blood to the lungs to lower the pressure. The trick here is getting the tension just right on the band - too high and it isn't helping the lungs, too low and there isn't enough blood getting to the lungs. While this is the least evasive of the 3 options we believe it still means opening up her chest (we are going to confirm this) and it was still major surgery according to the Drs.

So at this point our prayer is 3 fold. First a prayer of thanksgiving that YouYou's lungs aren't worse then they are and we have a good chance of stopping the damage. Second a prayer to give the Drs wisdom as they discuss her case that they would decide upon the surgery. Continued strength for YouYou and the rest of the family as we go through this together.