Hello There,
It has been some time since I have blogged. Time has passed by so quickly! As the header of this post reads, "No News is Good News" stands true. We haven't had too much going on until this point. Cannon and Colton are both doing great! They are both loving school and keeping us very busy. Cannon is now in Kindergarten and Colton is in Preschool. Cannon continues to grow and thrive just like any normal 5 year old. He is very excited to be 6 in a month. He can't wait! They are both ready for Christmas!
In July we went on a trip to Maryland for their aunts wedding ceremony. It was a beautiful wedding and a great family trip. Before we headed out on the trip we met with the pediatric cardiologist for Cannon's annual check up. They performed the normal echocardiogram, EKG, and the quick excercise test (Cannon running up and down the hall) to check for the active oxygen level. According to Dr. Reddy not much had changed in any of the results. Cannon's oxygen level was about 85 with excercise and low 90's at rest. Dr. Reddy informed us that we would go another year and see how things go. We were informed to keep an eye on the oxygen level throughout the year. If it falls near 85 at rest, they would more than likely intervene. He also mentioned he would consult with the surgeon (Dr. Charles Frazer) and get his thoughts.
In September, we received a call from the surgeons office and he wanted to have a consultation with us. On October 21, 2011, we met with Dr. Charles Frazer at Texas Children's in Houston. He discussed with us once again Cannon's condition and the multiple surgical repair options. At this time he feels that Cannon is best fit for the surgical repair within the next year or two. He discussed each surgical options pros and cons with us in detail and left the ball in our court to decide which procedure we want for Cannon. WOW!!! Now that isn't a decision I thought we would have to make. We've always known that surgery was inevitable, but we thought the professionals would make the decision on which procedure was the best for Cannon. However, we were able to conclude which procedures the surgeon thought would be best for him. In the end, we have decided to try to schedule the surgery this coming summer and we will go with the Double Switch/Restilli Operation.
After speaking with the surgeon, we really felt a sense of peace about the whole situation. Seeing Cannon on a daily basis makes it hard to see his struggles. Being our first child, his actions and ways of doing things are the "norm" for us. Even Colton follows after Cannon in many ways and to us it is all normal. But to someone on the outside, Cannon is obviously not as healthy as the other kids his age and it shows in things like when he interacts with other kids in his class. He is not able to keep up during physical activities. As Colton is getting older they are like all boys and becoming very competitive and it becomes obvious that Colton has much more energy that Cannon has ever had. Also, Cannon always seems exhausted, he still takes 1-2 hour naps everyday. Pulling all of this together, we have complete peace in knowing that we are making the best decision for his quality of life. I am told we will be amazed at how much more "alive" he will be post op. Now I tell myself, I can't wait to give him that opportunity.
We should hear from the surgeon around Spring and hopefully have a surgery date. I will post an update when we get closer.
Thank you all for your continued prayers. I know the times will be tough but the other side will be so much brighter and God controls everything.
Saturday, December 17, 2011
Monday, July 26, 2010
Buying More Time and Buying Chickens!
Cannon had his 6 month check up with the cardiologist on July 9th. They performed an echocardiogram (ECG) to confirm that nothing has changed within his hearts anatomy. Changes such as, thickening of the vetricle and closing of the pulmonary artery. It was confirmed that there has been no change. PRAISE GOD!!
The signs that we are seeing as Cannon exerts himself is normal with his condition and that will begin to become more obvious as his heart has to work harder and harder to pump the necessary oxygenated blood his body is requiring. His oxygen level when he runs , drops to the low 80's because his heart can't pump enough oxygenated blood through the body under that pressure. However, his oxygen level at rest is in the high 90's which is still very good at this stage of the game. As long as the "resting" oxygen level remains in the 90's the cardiologist would like to continue to "buy time" before planning surgery. He assures us that this will be best for the surgeon and will only increase the chances of a successful operation in the future.
So the good news......We don't have to see the cardiologist again for another YEAR!!! Praise to God that He continues to work a miracle with Cannon's heart. Through all of this we have had the two cardiologists that have cared for Cannon mention how he is a miracle. It is so true and my prayer for Cannon is that he will grow up to be a man who loves God, that he will use this trial in his young life as a testimony of God's grace and mercy. To testify that God is the Great Physician and He can do all things for He has created ALL things. He has a plan for Cannon and it is going to be a wonderful thing to watch him grow.
Thank you for your continued prayers!
In the meantime, we have decided to buy and raise some chickens. Yes, I said chickens! :) We are now the proud owners of 10 baby hens and 3 baby roosters. They are only about 5 days old today. Daddy has built them a nice temporary portable coop to keep them safe while they grow. Once they get bigger they will be moved to the permanent coop that is currently a work in progress. We are enjoying them right now, eargerly waiting for them to begin producing eggs. They will begin to lay at about 20 weeks. I am working on getting some pics posted.
The signs that we are seeing as Cannon exerts himself is normal with his condition and that will begin to become more obvious as his heart has to work harder and harder to pump the necessary oxygenated blood his body is requiring. His oxygen level when he runs , drops to the low 80's because his heart can't pump enough oxygenated blood through the body under that pressure. However, his oxygen level at rest is in the high 90's which is still very good at this stage of the game. As long as the "resting" oxygen level remains in the 90's the cardiologist would like to continue to "buy time" before planning surgery. He assures us that this will be best for the surgeon and will only increase the chances of a successful operation in the future.
So the good news......We don't have to see the cardiologist again for another YEAR!!! Praise to God that He continues to work a miracle with Cannon's heart. Through all of this we have had the two cardiologists that have cared for Cannon mention how he is a miracle. It is so true and my prayer for Cannon is that he will grow up to be a man who loves God, that he will use this trial in his young life as a testimony of God's grace and mercy. To testify that God is the Great Physician and He can do all things for He has created ALL things. He has a plan for Cannon and it is going to be a wonderful thing to watch him grow.
Thank you for your continued prayers!
In the meantime, we have decided to buy and raise some chickens. Yes, I said chickens! :) We are now the proud owners of 10 baby hens and 3 baby roosters. They are only about 5 days old today. Daddy has built them a nice temporary portable coop to keep them safe while they grow. Once they get bigger they will be moved to the permanent coop that is currently a work in progress. We are enjoying them right now, eargerly waiting for them to begin producing eggs. They will begin to lay at about 20 weeks. I am working on getting some pics posted.
Tuesday, June 22, 2010
What is C-CTGA?
The heart is pretty complex! It is hard to explain Cannon's heart in basic terminology, it can be pretty confusing. Here are a couple of pictures that might help make it more clear!
Here's a detailed 'C-CTGA' heart:
Congenitally corrected transposition of the great arteries (CCTGA) is a pretty rare heart defect in which the heart’s lower half is reversed. Of all babies born with a heart condition, approx. 0.5% - 1% have CCTGA. It is also called L-TGA. It is different from and much less common than “regular” transposition of the great arteries (TGA or D-TGA).
To understand CCTGA, it helps to first understand how a normal heart works. We're going back to Grade 9 Bio here! A normal heart is divided into two sides. The right side pumps blood from the body into the lungs. The left side pumps the blood from the lungs out to the body. Each side has an atrium and a ventricle.The atrium acts like a “waiting room” for the blood. The ventricle does the hard work of pushing the blood out to the lungs or body. At the entrance and exit from each ventricle is a valve, which acts like a door. These valves allow the ventricle to fill with blood from one side, and then push it out the other. Each ventricle and valve is designed to do its specific job. The right ventricle is designed to give the blood a gentle push to send it to the lungs. It is bigger than the left ventricle and does not have as much muscle. The left ventricle is designed to give the blood a strong push out to the body. It has less space inside because its thick walls take up more space. The valve between the left atrium and ventricle, the mitral valve, is the body’s strongest valve. It is designed to stay shut against the strong push of the blood out to the body.
In CCTGA, the two ventricles are reversed. The two valves "follow' the ventricles, so they are also reversed. The weaker, larger right ventricle grows on your heart’s left side. It now has to do the job of the stronger ventricle and pump the blood to your body. Your stronger, smaller left ventricle grows on your heart’s right side. It pumps blood to the lungs. Because it's the strong one, it's pumping with more pressure than is required to get to the lungs.
Although the two heart valves and two arteries are transposed or exit from the 'wrong' ventricle, the blood flows to the correct place because the ventricles are also reversed. And that's why it's called corrected....2 wrongs kinda make a right!
Still confusing huh?!
Here's a detailed 'C-CTGA' heart:
Congenitally corrected transposition of the great arteries (CCTGA) is a pretty rare heart defect in which the heart’s lower half is reversed. Of all babies born with a heart condition, approx. 0.5% - 1% have CCTGA. It is also called L-TGA. It is different from and much less common than “regular” transposition of the great arteries (TGA or D-TGA).
To understand CCTGA, it helps to first understand how a normal heart works. We're going back to Grade 9 Bio here! A normal heart is divided into two sides. The right side pumps blood from the body into the lungs. The left side pumps the blood from the lungs out to the body. Each side has an atrium and a ventricle.The atrium acts like a “waiting room” for the blood. The ventricle does the hard work of pushing the blood out to the lungs or body. At the entrance and exit from each ventricle is a valve, which acts like a door. These valves allow the ventricle to fill with blood from one side, and then push it out the other. Each ventricle and valve is designed to do its specific job. The right ventricle is designed to give the blood a gentle push to send it to the lungs. It is bigger than the left ventricle and does not have as much muscle. The left ventricle is designed to give the blood a strong push out to the body. It has less space inside because its thick walls take up more space. The valve between the left atrium and ventricle, the mitral valve, is the body’s strongest valve. It is designed to stay shut against the strong push of the blood out to the body.
In CCTGA, the two ventricles are reversed. The two valves "follow' the ventricles, so they are also reversed. The weaker, larger right ventricle grows on your heart’s left side. It now has to do the job of the stronger ventricle and pump the blood to your body. Your stronger, smaller left ventricle grows on your heart’s right side. It pumps blood to the lungs. Because it's the strong one, it's pumping with more pressure than is required to get to the lungs.
Although the two heart valves and two arteries are transposed or exit from the 'wrong' ventricle, the blood flows to the correct place because the ventricles are also reversed. And that's why it's called corrected....2 wrongs kinda make a right!
Still confusing huh?!
Monday, June 21, 2010
Better Late than Never!
Hello, I am just beginning this blog and have realized that I should have been blogging over four years ago. If there is anytime to start, I guess now is the time.
My name is Tori King, I am the wife of a wonderful man and the mother of two precious boys. My husband and I have been married for 7 years this past March. God blessed our lives with our first son, Cannon, in January 2006. Our lives changed just as everyone had warned us. However, we didn't imagine it would change so much, so quickly. Cannon was born with Congentital-Corrected Transposition of the Great Arteries (C-CTGA), Ventrical Septal Defect (VSD), and Pulmonary Stenosis (PS). The diagnosis of these multiple defects was not determined for some time after his birth. At birth it was no more than a murmur and we were told that it would more than likely resolve on its own in a couple of weeks. As we returned to the pediatrician for his weekly follow up appointment, he wasn't so sure that it was going away as expected. The doctor ordered us to have an infant echocardiogram performed. We quickly scheduled this with Texas Childrens Hospital in The Woodlands after determining all the other hospitals around didn't perform infant ECG's. Now that we are able to look back over the last four years we can see God's hand in it all. He lined everything up and placed us in the care of not only the best children's hospital in Texas but with who I think of as the worlds BEST pediatric cardiologist.She has since moved to Kentucky and we miss her greatly. After her review of his ECG, it was obvious that there was much more going on with Cannon's heart. The multiple defects were hard to diagnose initially. Cannon was diagnosed first with Double Outlet Right Ventricle (DORV) . His case was under review by a team of cardiologists associated with Texas Childrens. It wasn't until Cannon was three months old that we had an MRI performed due to excessive regurgitation and it was then determined that he had C-CTGA, VSD and PS. From this time on Cannon was on 7different heart medications to keep him from heart failure. He was also administered an injection once a month called RSV, to prevent him from any infections that could occur in the hole in his heart. Cannon was a very easy going baby once we got the excessive vomitting under control. Cannon has continued to grow and he has always been on target with weight gain and food intake. We never experienced any signs of cyanosis and still haven't to this day. When Cannon was about 1 year, I decided with the cardiologists blessing, to remove the medications, one by one. Cannon has been free of all medications since about 14 months old. Praise GOD!! We continue to have 6month follow up visits with the cardiologist at Texas Childrens. As we observe Cannon on a daily basis, it is obvious that he isn't like all the other 4 year olds he goes to school with or plays with. It is becoming more obvious that his heart is starting to weaken and he isn't getting as much oxygenated blood as a healthy heart would provide. At our last follow up visit in January 2010, Cannon's pulse ox was at 92. We are watching it occasionally at pediatrician visits and it is beginning to drop around 90, at rest.
We have our next visit with the cardiologist at Texas Childrens on July 7th. At this time we will see where his stats are and see what the professionals have to say. Until then we pray faithfully, that our Lord above will perform a miracle in Cannon's body.
In April 2008, we were blessed again with our second baby boy, Colton. He was born April 23rd, 2008. He was 8lb, 5oz and healthy! We found ourselves trying to figure out what to do with a healthy baby, I guess more like what we don't have to do. They both get along greatly and love each other very much. Where there is one, you will find the other.
Our God is an awesome God and we know He has a plan. What may look messy, like the back of a tapestry, is just a BEAUTIFUL picture being woven on the other side.
I will try my best to keep this post updated as much as possible.
Thanks for visiting.
With Love,
The Kings
My name is Tori King, I am the wife of a wonderful man and the mother of two precious boys. My husband and I have been married for 7 years this past March. God blessed our lives with our first son, Cannon, in January 2006. Our lives changed just as everyone had warned us. However, we didn't imagine it would change so much, so quickly. Cannon was born with Congentital-Corrected Transposition of the Great Arteries (C-CTGA), Ventrical Septal Defect (VSD), and Pulmonary Stenosis (PS). The diagnosis of these multiple defects was not determined for some time after his birth. At birth it was no more than a murmur and we were told that it would more than likely resolve on its own in a couple of weeks. As we returned to the pediatrician for his weekly follow up appointment, he wasn't so sure that it was going away as expected. The doctor ordered us to have an infant echocardiogram performed. We quickly scheduled this with Texas Childrens Hospital in The Woodlands after determining all the other hospitals around didn't perform infant ECG's. Now that we are able to look back over the last four years we can see God's hand in it all. He lined everything up and placed us in the care of not only the best children's hospital in Texas but with who I think of as the worlds BEST pediatric cardiologist.She has since moved to Kentucky and we miss her greatly. After her review of his ECG, it was obvious that there was much more going on with Cannon's heart. The multiple defects were hard to diagnose initially. Cannon was diagnosed first with Double Outlet Right Ventricle (DORV) . His case was under review by a team of cardiologists associated with Texas Childrens. It wasn't until Cannon was three months old that we had an MRI performed due to excessive regurgitation and it was then determined that he had C-CTGA, VSD and PS. From this time on Cannon was on 7different heart medications to keep him from heart failure. He was also administered an injection once a month called RSV, to prevent him from any infections that could occur in the hole in his heart. Cannon was a very easy going baby once we got the excessive vomitting under control. Cannon has continued to grow and he has always been on target with weight gain and food intake. We never experienced any signs of cyanosis and still haven't to this day. When Cannon was about 1 year, I decided with the cardiologists blessing, to remove the medications, one by one. Cannon has been free of all medications since about 14 months old. Praise GOD!! We continue to have 6month follow up visits with the cardiologist at Texas Childrens. As we observe Cannon on a daily basis, it is obvious that he isn't like all the other 4 year olds he goes to school with or plays with. It is becoming more obvious that his heart is starting to weaken and he isn't getting as much oxygenated blood as a healthy heart would provide. At our last follow up visit in January 2010, Cannon's pulse ox was at 92. We are watching it occasionally at pediatrician visits and it is beginning to drop around 90, at rest.
We have our next visit with the cardiologist at Texas Childrens on July 7th. At this time we will see where his stats are and see what the professionals have to say. Until then we pray faithfully, that our Lord above will perform a miracle in Cannon's body.
In April 2008, we were blessed again with our second baby boy, Colton. He was born April 23rd, 2008. He was 8lb, 5oz and healthy! We found ourselves trying to figure out what to do with a healthy baby, I guess more like what we don't have to do. They both get along greatly and love each other very much. Where there is one, you will find the other.
Our God is an awesome God and we know He has a plan. What may look messy, like the back of a tapestry, is just a BEAUTIFUL picture being woven on the other side.
I will try my best to keep this post updated as much as possible.
Thanks for visiting.
With Love,
The Kings
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