It has been 8 days since our entire world changed, yet stayed
exactly the same. I was a zombie last week, not entirely sure what
to feel and what to do. I was crying off an on for no reason and
for every reason. All of your wonderful comments here, on facebook,
and in person meant the world to us. You have no idea how helpful
it is to know so many people care about our sweet girl and our
family.
After finding our way out of the fog, Dale and I realized we didn't ask a lot of questions of Dr. Cutler. We hadn't even asked the biggest question of all: What does it all mean? So, because its the only way I knew that I would get everything across to Dr. Cutler and wouldn't miss asking a question due to emotions, I wrote her an email late last week.
We spoke at length this afternoon. Dr. Cutler responded to all of our questions and gave more nuance to the situation than I was capable of hearing last week. Of course, our main question of what it all means wasn't answered directly. We knew it couldn't be answered, but we still had to ask. Instead, Dr. Cutler tried to give us the short-term, mid-term, and long-term views for Izzy.
In the short-term, we had requested that Dr. Cutler consider putting Izzy back on oxygen at night. Izzy's heart doesn't work as hard when she has oxygen at night, so she can rest better. Without oxygen, even when Izzy sleeps, her heart has to work so hard to oxygenate her blood that it is as if she is running in her sleep. Oxygen won't fix anything and it won't help her pulmonary arteries grow as was once hoped, but it will allow her better rest so hopefully she will feel better in the mornings. Dr. Cutler agreed to the oxygen. We will get that tomorrow night and Izzy is excited. I'm sure she'll put up a fight when we try to connect the cannula, but right now, she likes the idea of waking up feeling better.
As for the mid-term view, the fact that the doctors don't see any way to help Izzy's heart simply means she will continue to get sicker. Nobody knows how quickly or what exactly will happen. In the mean time, we have to continue to help her understand that her body can't do everything that she wants it to do. Dr. Cutler gave us coping strategies of lowering Izzy's expectations and trying to make plans that include lots of rest and down time so that Izzy will not get disappointed when she can't keep up. Practically speaking, this means if we say we can't do something on the weekend because Izzy needs a nap, it's because she does. Even at almost 5 years old, she needs a nap and downtime or rest.
Longer term, Dr. Cutler couldn't tell us if Izzy's heart and lungs could hold on for 1 year or 5. She just doesn't know. I don't remember how it came up, but I said something about things changing in 2 years for Izzy such that we might get a different outlook. Dr. Cutler agreed that we don't know what will be needed for Izzy in 2 years, but she tempered any idea that there may be an answer for Izzy in the future. She reiterated that there is no research being done right now that looks promising for Izzy, especially since most pediatric procedures trickle down from work being done on adults. Nobody is working on something for adults with defects like McKenzie. Acquired heart disease simply doesn't look or act the same.
Dr. Cutler was worried that Dale and I were going to start searching for other opinions on surgeries to help Izzy's heart. She was not worried in that she thinks her opinion is the only one that matters (she has always been very good about seeking other opinions and get more information from others). No, Dr. Cutler was worried we would find another doctor who might think they can help Izzy, but any such doctor would be taking an extraordinary risk without much chance of any improvement. We discussed that Izzy needs new therapies that don't exist, new vessels to be built. We need stem cell research to be much further along than it is. While she was telling us how to let Izzy enjoy life and continue being a kid, she wanted us to know that she didn't believe research would come to fruition fast enough to save Izzy.
Finally, we had asked Dr. Cutler whether it wouldn't more prudent to get a second opinion on the heart-lung transplant from doctors that actually do heart-lung transplants. I don't doubt that all of the cardiologists looking at Izzy's case are wonderful physicians and surgeons, who truly believe that heart-lung transplant is not a good choice for her. However, none of them have real-world experience in deciding whether to list a child for a heart-lung transplant and actually doing it.
Dr. Cutler is in agreement with us that we should talk with the specialists with experience in this area, rather than relying on articles and data in a book. I don't think she is convinced that listing Izzy for a heart-lung transplant is the right decision, but she is interested in getting the most information, just as we are, so that the best answer can be reached for our family.
There are only a handful of hospitals in the country that do heart-lung transplants on children. The Children's Hospital of Pittsburgh is the hospital leading the way in this area. The other hospitals with heart-lung programs are basing those programs on the work already done by Pittsburgh. So, Dr. Cutler is going to contact the doctors at Pittsburgh to help start us on the path to getting a second opinion regarding the heart-lung transplant. She will get them the medical records needed and when it is time, they will be in contact with us. I have no idea how quickly this will happen.
I'm not saying Izzy will ever be listed for a heart-lung transplant (even if she qualifies), but Dale and I can't give up fighting and searching without considering all available options. The mortality rates for people receiving heart-lung transplants are dismal. They are even worse for someone with Izzy's underlying anatomy. And if Izzy were to be listed, she'd need to wait close to the hospital, not at home. Our family would be separated completely. And even if she survived all of that, we don't know that her quality of life will be better and it could be worse. Hopefully, the doctors at Pittsburgh can give us some more answers so that whatever ultimate decision is made, can be made more easily (although, I'm certain it will never be easy). Thankfully, Dr. Cutler is on board with us and will help us weigh the information.
For now, we continue to live life. A couple of people were shocked that Dale and I grounded Izzy to her room for a lot of last week in light of our news. I ask you all to think about it: this little girl has to be extraordinarily strong-willed to hold onto this life she has been given; that same strong-will is about to turn 5 and thinks she is right and ought to be able to do whatever she wants. That leads to loss of privileges . . . often.
Don't worry though because Izzy did get to go to a party this past weekend. And she got to dance. She loves to dance. Of course, after a little while, she couldn't dance on her own, so we lifted her into our arms and swung her around. She loved every minute.
Thank you all again for thinking of our family,
Mel
After finding our way out of the fog, Dale and I realized we didn't ask a lot of questions of Dr. Cutler. We hadn't even asked the biggest question of all: What does it all mean? So, because its the only way I knew that I would get everything across to Dr. Cutler and wouldn't miss asking a question due to emotions, I wrote her an email late last week.
We spoke at length this afternoon. Dr. Cutler responded to all of our questions and gave more nuance to the situation than I was capable of hearing last week. Of course, our main question of what it all means wasn't answered directly. We knew it couldn't be answered, but we still had to ask. Instead, Dr. Cutler tried to give us the short-term, mid-term, and long-term views for Izzy.
In the short-term, we had requested that Dr. Cutler consider putting Izzy back on oxygen at night. Izzy's heart doesn't work as hard when she has oxygen at night, so she can rest better. Without oxygen, even when Izzy sleeps, her heart has to work so hard to oxygenate her blood that it is as if she is running in her sleep. Oxygen won't fix anything and it won't help her pulmonary arteries grow as was once hoped, but it will allow her better rest so hopefully she will feel better in the mornings. Dr. Cutler agreed to the oxygen. We will get that tomorrow night and Izzy is excited. I'm sure she'll put up a fight when we try to connect the cannula, but right now, she likes the idea of waking up feeling better.
As for the mid-term view, the fact that the doctors don't see any way to help Izzy's heart simply means she will continue to get sicker. Nobody knows how quickly or what exactly will happen. In the mean time, we have to continue to help her understand that her body can't do everything that she wants it to do. Dr. Cutler gave us coping strategies of lowering Izzy's expectations and trying to make plans that include lots of rest and down time so that Izzy will not get disappointed when she can't keep up. Practically speaking, this means if we say we can't do something on the weekend because Izzy needs a nap, it's because she does. Even at almost 5 years old, she needs a nap and downtime or rest.
Longer term, Dr. Cutler couldn't tell us if Izzy's heart and lungs could hold on for 1 year or 5. She just doesn't know. I don't remember how it came up, but I said something about things changing in 2 years for Izzy such that we might get a different outlook. Dr. Cutler agreed that we don't know what will be needed for Izzy in 2 years, but she tempered any idea that there may be an answer for Izzy in the future. She reiterated that there is no research being done right now that looks promising for Izzy, especially since most pediatric procedures trickle down from work being done on adults. Nobody is working on something for adults with defects like McKenzie. Acquired heart disease simply doesn't look or act the same.
Dr. Cutler was worried that Dale and I were going to start searching for other opinions on surgeries to help Izzy's heart. She was not worried in that she thinks her opinion is the only one that matters (she has always been very good about seeking other opinions and get more information from others). No, Dr. Cutler was worried we would find another doctor who might think they can help Izzy, but any such doctor would be taking an extraordinary risk without much chance of any improvement. We discussed that Izzy needs new therapies that don't exist, new vessels to be built. We need stem cell research to be much further along than it is. While she was telling us how to let Izzy enjoy life and continue being a kid, she wanted us to know that she didn't believe research would come to fruition fast enough to save Izzy.
Finally, we had asked Dr. Cutler whether it wouldn't more prudent to get a second opinion on the heart-lung transplant from doctors that actually do heart-lung transplants. I don't doubt that all of the cardiologists looking at Izzy's case are wonderful physicians and surgeons, who truly believe that heart-lung transplant is not a good choice for her. However, none of them have real-world experience in deciding whether to list a child for a heart-lung transplant and actually doing it.
Dr. Cutler is in agreement with us that we should talk with the specialists with experience in this area, rather than relying on articles and data in a book. I don't think she is convinced that listing Izzy for a heart-lung transplant is the right decision, but she is interested in getting the most information, just as we are, so that the best answer can be reached for our family.
There are only a handful of hospitals in the country that do heart-lung transplants on children. The Children's Hospital of Pittsburgh is the hospital leading the way in this area. The other hospitals with heart-lung programs are basing those programs on the work already done by Pittsburgh. So, Dr. Cutler is going to contact the doctors at Pittsburgh to help start us on the path to getting a second opinion regarding the heart-lung transplant. She will get them the medical records needed and when it is time, they will be in contact with us. I have no idea how quickly this will happen.
I'm not saying Izzy will ever be listed for a heart-lung transplant (even if she qualifies), but Dale and I can't give up fighting and searching without considering all available options. The mortality rates for people receiving heart-lung transplants are dismal. They are even worse for someone with Izzy's underlying anatomy. And if Izzy were to be listed, she'd need to wait close to the hospital, not at home. Our family would be separated completely. And even if she survived all of that, we don't know that her quality of life will be better and it could be worse. Hopefully, the doctors at Pittsburgh can give us some more answers so that whatever ultimate decision is made, can be made more easily (although, I'm certain it will never be easy). Thankfully, Dr. Cutler is on board with us and will help us weigh the information.
For now, we continue to live life. A couple of people were shocked that Dale and I grounded Izzy to her room for a lot of last week in light of our news. I ask you all to think about it: this little girl has to be extraordinarily strong-willed to hold onto this life she has been given; that same strong-will is about to turn 5 and thinks she is right and ought to be able to do whatever she wants. That leads to loss of privileges . . . often.
Don't worry though because Izzy did get to go to a party this past weekend. And she got to dance. She loves to dance. Of course, after a little while, she couldn't dance on her own, so we lifted her into our arms and swung her around. She loved every minute.
Thank you all again for thinking of our family,
Mel
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Posted Feb 18, 2013 2:00pm
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