Wednesday, October 10, 2012
Current DIagnosis
3:25 PM
I know I already posted today, but I wanted to write down what the findings were at our last appointments, even though it has been over a month since those happened. We have another cardiology appointment on Friday and I want to make sure I remember where we were at before that.
1) AV-Canal Defect: This is still the case. However, because of the under-developed Right Ventricle, we probably won't be doing surgery for this.
2) Under-developed Right Ventricle: This was the big find at the last appointment. The right ventricle, which is the one that pumps blood from the heart to the lungs, is not going to be strong. Because of this, little man will goes through a series of surgeries to bypass the ventricle completely and divert the blood directly into the lungs. Normally, this is done with three different surgeries, but it is looking like we may be able to skip the first one and make the second one his first surgery. This would be done when he is 4-6 months old. This is really exciting news because the first surgery would normally be done pretty quickly, which makes some of his developmental milestone difficult to reach. The longer we can wait for surgery, the better.
3) Missing Main Pulmonary Artery: Honestly, this in one that I don't understand completely and I am hoping to after this next appointment. From what I can understand, the pulmonary artery takes the blood from the heart to the lungs. With our little guy, it looks like the aorta (which takes blood from the heart to the rest of the body) actually has an artery coming off of it that looks like it goes to the lungs. Obviously, if blood is not getting to the lungs, this is a VERY serious thing. It will be one of the very first things they check to make sure there is blood flow to the lungs.
4) The 4 Pulmonary Veins: When the blood comes back to the heart from the lungs, it does so through 4 veins (called the pulmonary veins). In our little man, it looks like they are all there, but the veins are longer and taking a "weird" route back to the heart. This can be a problem for several reasons, including a) more space for blockage and kinking. b) underdevelopment, which decreases blood flow. I know there are more, but I can't remember right now.
5) Heterotaxy: This is the issue of organs being backwards and/or on the wrong side of the body. From what we know now, little man's heart is flipped (so the heart is pointing to the wrong side of the body...the left side is on the right and the right side is on the left). Also, we know that his stomach is on the wrong side. These two things can be indicators that other organs in the body could be mixed up. Some of the common ones they have talked with us about are a) missing or multiple spleens and b) issues with the intestines. The spleen plays a key role in children in the development of their immune system. While adults don't really need them, children who are born without one can suffer from very low immunity. The intestines can have issues like being twisted, kinked, and knotted. They will do a test before anything is fed to little man to make sure everything with the intestines is alright.
Needless to say, there are a LOT of issues...and most likely, I forgot something. Hopefully, I will continue to improve my understanding at this next appointment this week. :)
1) AV-Canal Defect: This is still the case. However, because of the under-developed Right Ventricle, we probably won't be doing surgery for this.
2) Under-developed Right Ventricle: This was the big find at the last appointment. The right ventricle, which is the one that pumps blood from the heart to the lungs, is not going to be strong. Because of this, little man will goes through a series of surgeries to bypass the ventricle completely and divert the blood directly into the lungs. Normally, this is done with three different surgeries, but it is looking like we may be able to skip the first one and make the second one his first surgery. This would be done when he is 4-6 months old. This is really exciting news because the first surgery would normally be done pretty quickly, which makes some of his developmental milestone difficult to reach. The longer we can wait for surgery, the better.
3) Missing Main Pulmonary Artery: Honestly, this in one that I don't understand completely and I am hoping to after this next appointment. From what I can understand, the pulmonary artery takes the blood from the heart to the lungs. With our little guy, it looks like the aorta (which takes blood from the heart to the rest of the body) actually has an artery coming off of it that looks like it goes to the lungs. Obviously, if blood is not getting to the lungs, this is a VERY serious thing. It will be one of the very first things they check to make sure there is blood flow to the lungs.
4) The 4 Pulmonary Veins: When the blood comes back to the heart from the lungs, it does so through 4 veins (called the pulmonary veins). In our little man, it looks like they are all there, but the veins are longer and taking a "weird" route back to the heart. This can be a problem for several reasons, including a) more space for blockage and kinking. b) underdevelopment, which decreases blood flow. I know there are more, but I can't remember right now.
5) Heterotaxy: This is the issue of organs being backwards and/or on the wrong side of the body. From what we know now, little man's heart is flipped (so the heart is pointing to the wrong side of the body...the left side is on the right and the right side is on the left). Also, we know that his stomach is on the wrong side. These two things can be indicators that other organs in the body could be mixed up. Some of the common ones they have talked with us about are a) missing or multiple spleens and b) issues with the intestines. The spleen plays a key role in children in the development of their immune system. While adults don't really need them, children who are born without one can suffer from very low immunity. The intestines can have issues like being twisted, kinked, and knotted. They will do a test before anything is fed to little man to make sure everything with the intestines is alright.
Needless to say, there are a LOT of issues...and most likely, I forgot something. Hopefully, I will continue to improve my understanding at this next appointment this week. :)
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Joshua Kent Ipson was born December 1, 2012 with a very complicated combination of congenital heart defects. After 2 1/2 months of fighting for his life, he passed away on February 13, 2013. We invite you to share our experiences as we grieve his loss, rejoice in God's plan, & keep Joshua's message of hope alive.
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