There will be no 8th heart catheterization for Izzy. There will
not be surgery. There will not be a transplant. Izzy's symptoms are
an indication of the progression of her disease and there is
nothing that science as it stands today can do about it.
Izzy's primary cardiologist and the cardiac surgical board, interventional cardiologists, and staff cardiologists at Mott went through Izzy's entire history today. They discussed every possibility. They discussed Izzy's collaterals and whether any can be coiled, but as we were told last week, that is not a possibility because all of the collaterals are too small. And the largest collateral is not even a collateral because it is the only blood source for Izzy's lower left lung.
They discussed what was described to me as Izzy's aneurismal right ventricle. They looked at it more closely and determined that they were seeing a balloon where a patch was used during Izzy's last open heart surgery to place her conduit. The balloon is causing an "energy sink", which was explained to me as blood coming in but not going out. They discussed possibly taking the patch out and replacing it with a patch that is folded over and tight, rather than a balloon. But Children's Hospital of Boston just, just released a study looking at whether folding over the patch and pulling it tight was better for the heart than leaving it to balloon out. The study found that in both instances the outcomes were the same. Accordingly, there was no reason to open Izzy's chest, ribs, and heart again for something that would do nothing.
They discussed that the pressure in Izzy's right ventricle is 2/3 systemic and twice as great as the left ventricle. But that there was nothing to do for it. They looked at the backflow from her natural pulmonary valve and her mechanical valve. The backflow does not account for the damage seen (as I said before). The doctors agreed that if they were doing surgery for some other purpose, they'd attempt to close Izzy's natural pulmonary valve, but in and of itself, there would be no reason to do it. It might make things slightly better, but not enough to get her healthier.
They discussed the stent in Izzy's right pulmonary artery and how it blocks blood flow still and needs to be ballooned open. They all agreed that even with Dr. Armstrong's fancy maneuvering in the cath lab, she would not be likely to be able to get into the stent due to its placement (but would place Izzy at great risk). The stent needs to be cut and folded during open heart surgery in order to be ballooned more. And even doing that would not help enough because of the stenosis farther down the pulmonary artery chain where nothing can be done without killing Izzy or completely blocking off blood flow to parts of the lungs.
All of the Mott doctors agreed that there was nothing to be done. Izzy just has too many heart defects that are too difficult to address. Research has not come far enough.
Dr. Cutler asked their thoughts on transplant. The transplant doctor said "NO, she would need a heart and lung transplant and that would make her worse-off than she is now." (I know from previous research of my own that heart-lung transplants are rarely done and when done have extremely high mortality rates.) While she is sick now and declining, a heart-lung transplant would likely make her quality of life worse (at least at this point).
The adult congenital heart specialist spoke up and said "I have a 30 year old patient going through this exact same thing right now." Dr. Cutler spoke up and said "But McKenzie is 4. She is not going to make it to 30." At that, the entire room of cardiologists was silent.
The conversation was very hard. Dr. Cutler was in tears on the call. I was in tears, but trying to hold it together because I was alone with Phineas in the parking lot of Kroger. Dr. Cutler apologized over and over. She wanted to find an answer and is just as devastated as we are that none exists.
In the end, we are again treating Izzy's symptoms as her new normal. When she declines further, we will call Dr. Cutler again. She will treat the symptoms. We can still hold out hope that Izzy stays around for a long time, but we know that her heart is very sick and very tired. And we don't know when it will not be able to keep up the brisk pace Izzy demands. And when Izzy asks "Mommy, when will I feel better?", I'll have to continue telling her that her heart is not going to get better.
Hug your loved ones tight and often, tell them that you love them always, and be good to yourself. Life is too short for anything less.
And Izzy would say "don't forget to dance".
Izzy's primary cardiologist and the cardiac surgical board, interventional cardiologists, and staff cardiologists at Mott went through Izzy's entire history today. They discussed every possibility. They discussed Izzy's collaterals and whether any can be coiled, but as we were told last week, that is not a possibility because all of the collaterals are too small. And the largest collateral is not even a collateral because it is the only blood source for Izzy's lower left lung.
They discussed what was described to me as Izzy's aneurismal right ventricle. They looked at it more closely and determined that they were seeing a balloon where a patch was used during Izzy's last open heart surgery to place her conduit. The balloon is causing an "energy sink", which was explained to me as blood coming in but not going out. They discussed possibly taking the patch out and replacing it with a patch that is folded over and tight, rather than a balloon. But Children's Hospital of Boston just, just released a study looking at whether folding over the patch and pulling it tight was better for the heart than leaving it to balloon out. The study found that in both instances the outcomes were the same. Accordingly, there was no reason to open Izzy's chest, ribs, and heart again for something that would do nothing.
They discussed that the pressure in Izzy's right ventricle is 2/3 systemic and twice as great as the left ventricle. But that there was nothing to do for it. They looked at the backflow from her natural pulmonary valve and her mechanical valve. The backflow does not account for the damage seen (as I said before). The doctors agreed that if they were doing surgery for some other purpose, they'd attempt to close Izzy's natural pulmonary valve, but in and of itself, there would be no reason to do it. It might make things slightly better, but not enough to get her healthier.
They discussed the stent in Izzy's right pulmonary artery and how it blocks blood flow still and needs to be ballooned open. They all agreed that even with Dr. Armstrong's fancy maneuvering in the cath lab, she would not be likely to be able to get into the stent due to its placement (but would place Izzy at great risk). The stent needs to be cut and folded during open heart surgery in order to be ballooned more. And even doing that would not help enough because of the stenosis farther down the pulmonary artery chain where nothing can be done without killing Izzy or completely blocking off blood flow to parts of the lungs.
All of the Mott doctors agreed that there was nothing to be done. Izzy just has too many heart defects that are too difficult to address. Research has not come far enough.
Dr. Cutler asked their thoughts on transplant. The transplant doctor said "NO, she would need a heart and lung transplant and that would make her worse-off than she is now." (I know from previous research of my own that heart-lung transplants are rarely done and when done have extremely high mortality rates.) While she is sick now and declining, a heart-lung transplant would likely make her quality of life worse (at least at this point).
The adult congenital heart specialist spoke up and said "I have a 30 year old patient going through this exact same thing right now." Dr. Cutler spoke up and said "But McKenzie is 4. She is not going to make it to 30." At that, the entire room of cardiologists was silent.
The conversation was very hard. Dr. Cutler was in tears on the call. I was in tears, but trying to hold it together because I was alone with Phineas in the parking lot of Kroger. Dr. Cutler apologized over and over. She wanted to find an answer and is just as devastated as we are that none exists.
In the end, we are again treating Izzy's symptoms as her new normal. When she declines further, we will call Dr. Cutler again. She will treat the symptoms. We can still hold out hope that Izzy stays around for a long time, but we know that her heart is very sick and very tired. And we don't know when it will not be able to keep up the brisk pace Izzy demands. And when Izzy asks "Mommy, when will I feel better?", I'll have to continue telling her that her heart is not going to get better.
Hug your loved ones tight and often, tell them that you love them always, and be good to yourself. Life is too short for anything less.
And Izzy would say "don't forget to dance".
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