I just talked to Izzy's cardiologist. She had some good news and
some not so good news.
The good news is that Izzy's right ventricle has improved since her last MRI in July 2010 compared to her body size. That means, her right ventricle liked her last open heart surgery and it was definitely the correct decision (if there was any lingering doubt, which we didn't have). Granted, we knew that her right ventricle had improved following surgery, but now we know this compared to her body size since she has grown quite a bit since that surgery.
The real question (for me) was why she started to decline in the last year (remember she is over 2 years past her last open heart surgery). We have no idea if her right ventricle is better than a year ago or it has declined (or stayed the same). But, we know it is better than when she was so very sick in the summer of 2010.
In the not so good arena, we've learned that 25-35% of all blood flow between Izzy's heart and lungs is from aorto-pulmonary collaterals. That means, instead of blood going from the heart through Izzy's mechanical pulmonary valve and conduit to the pulmonary arteries and ultimately to the lungs, Izzy's body has created many extra vessels coming off the aorta and going to the lungs directly. (For those not aware, the aorta carries red, oxygenated blood from the heart out to the body, so vessels coming off the aorta and going to the lungs are merely bringing oxygenated blood back to the lungs.)
The existence of collateral vessels off the aorta is not news to us. These are the same type of vessels that saved Izzy as a newborn when she didn't have a true pulmonary valve and artery and did not have a pda (which normally acts like a pulmonary valve when the baby is in utero). Without those collateral vessels, Izzy could not have survived outside of the womb.
What was news is the large quantity of blood flowing through the collateral vessels. In Izzy's last MRI, she did not have such a huge percentage of blood flowing that way. This could very well be the cause of Izzy's swelling and lethargy. She is getting too much blood flow to the lungs. And 25-35% of her blood flow is not getting out to the body, but being returned to the lungs before the oxygen is used, so her heart has to work harder to keep the rest of the body oxygenated.
The plan as of today is for Izzy to undergo another catheterization in hopes of being able to coil off some of these collateral vessels. The doctor will insert a small spring into the vessel, which will catch platelets and clot off the vessel, causing it to stop working. Dr. Cutler actually said she was "cautiously optimistic" regarding this plan. (She has never said anything this positive when it comes to a surgery for McKenzie.)
Dale and I are not too sure about the plan yet and would not use the word optimistic. This will not be the first time the doctors have tried to coil Izzy's collaterals. They've only been able to do one successfully and that was when she was two weeks old. The second time they attempted to do so when she was 5 months old, the coil got lodged in a dangerous location and the doctors had to go in with a second catheter from the opposite direction and pull the coil straight to get it back out. Izzy no longer has that much access. In the past, all of the collaterals were too small to coil. And we wonder what will happen if that blood can't flow through the collaterals. Won't that just increase the already high pressure in Izzy's pulmonary arteries? Are we changing one problem for another? Unfortunately, we know Izzy can't continue to be fluid loaded indefinitely and her little heart can't continue to work so hard.
The interventional cardiologist is out of town until next week, so we don't expect to hear more until then. But, we do expect Izzy to undergo her 8th heart catheterization fairly soon.
Mel
The good news is that Izzy's right ventricle has improved since her last MRI in July 2010 compared to her body size. That means, her right ventricle liked her last open heart surgery and it was definitely the correct decision (if there was any lingering doubt, which we didn't have). Granted, we knew that her right ventricle had improved following surgery, but now we know this compared to her body size since she has grown quite a bit since that surgery.
The real question (for me) was why she started to decline in the last year (remember she is over 2 years past her last open heart surgery). We have no idea if her right ventricle is better than a year ago or it has declined (or stayed the same). But, we know it is better than when she was so very sick in the summer of 2010.
In the not so good arena, we've learned that 25-35% of all blood flow between Izzy's heart and lungs is from aorto-pulmonary collaterals. That means, instead of blood going from the heart through Izzy's mechanical pulmonary valve and conduit to the pulmonary arteries and ultimately to the lungs, Izzy's body has created many extra vessels coming off the aorta and going to the lungs directly. (For those not aware, the aorta carries red, oxygenated blood from the heart out to the body, so vessels coming off the aorta and going to the lungs are merely bringing oxygenated blood back to the lungs.)
The existence of collateral vessels off the aorta is not news to us. These are the same type of vessels that saved Izzy as a newborn when she didn't have a true pulmonary valve and artery and did not have a pda (which normally acts like a pulmonary valve when the baby is in utero). Without those collateral vessels, Izzy could not have survived outside of the womb.
What was news is the large quantity of blood flowing through the collateral vessels. In Izzy's last MRI, she did not have such a huge percentage of blood flowing that way. This could very well be the cause of Izzy's swelling and lethargy. She is getting too much blood flow to the lungs. And 25-35% of her blood flow is not getting out to the body, but being returned to the lungs before the oxygen is used, so her heart has to work harder to keep the rest of the body oxygenated.
The plan as of today is for Izzy to undergo another catheterization in hopes of being able to coil off some of these collateral vessels. The doctor will insert a small spring into the vessel, which will catch platelets and clot off the vessel, causing it to stop working. Dr. Cutler actually said she was "cautiously optimistic" regarding this plan. (She has never said anything this positive when it comes to a surgery for McKenzie.)
Dale and I are not too sure about the plan yet and would not use the word optimistic. This will not be the first time the doctors have tried to coil Izzy's collaterals. They've only been able to do one successfully and that was when she was two weeks old. The second time they attempted to do so when she was 5 months old, the coil got lodged in a dangerous location and the doctors had to go in with a second catheter from the opposite direction and pull the coil straight to get it back out. Izzy no longer has that much access. In the past, all of the collaterals were too small to coil. And we wonder what will happen if that blood can't flow through the collaterals. Won't that just increase the already high pressure in Izzy's pulmonary arteries? Are we changing one problem for another? Unfortunately, we know Izzy can't continue to be fluid loaded indefinitely and her little heart can't continue to work so hard.
The interventional cardiologist is out of town until next week, so we don't expect to hear more until then. But, we do expect Izzy to undergo her 8th heart catheterization fairly soon.
Mel
11 Message(s) from Carepages
No comments:
Post a Comment