Today marks the first year of my fathers passing. I miss you dad!
Monday, August 28, 2006
Sunday, August 27, 2006
Latest Development
Nancy took Kelsey to the cardiologist on Friday. It appears that her oxygen level has dropped to a point where they are getting worried about her. She still appears to be fine. The doctor called and spoke to the surgeon and they are wanting to move her surgery date up. She has another appointment on Wednesday. Nancy said that they found that Kelsey's pulmonary artery is to narrow and they may cut and implant a stint of some type into the artery. The doctor is not sure as to the length of the narrowed artery, which may require an angioplasty also known as balloon dilation to open up the unknown narrowed artery at a later date. I will update as I get a better understanding as to what the doctor is thinking.
Friday, August 18, 2006
Kelsey's Surgery Has Been Confirmed!
Well, we just got the word on Kelsey's surgery. It will be on September 14th 2006. She has a pre-op appointment on September 13th at 9:00 am. Not sure what time the surgery will be on Thursday. We will let you know as we hear more.
I Am 6 Weeks Old
Hello everyone I just wanted to let you know I turned 6 weeks old yesterday. I am practicing laying out at the beach. I will be laying like this in the sun all summer long.
Wednesday, August 16, 2006
Appointment with Surgeon
Today was our appointment with the surgeon Dr. Tam. We were scheduled at 2:00pm, but unfortunately Dr. Tam was called into emergency surgery about 1:30pm. We spent 2 hours getting to know Cooks Children's Hospital. Finally at 4:00 we were able to meet with him.
As you may imagine we had a trillion questions.
Q: What is his mortality rate?
A: I can't remember the last one, but it is really low, about 1%
Q: How many TOF surgeries have you performed?
A: I have been doing this for 13 years and perform about 300-400 a year.
Q: What are the risks?
A: Oxygen saturation during surgery with heart-lung machine, mortality, and blood transfusion, which could contain disease such as Aids.
Q: How long should we wait before we do surgery?
A: There are no medical advantages that we know of to wait for her to reach a certain weight. I would recommend in the next 2 to 3 weeks.
Q: Will they remove the valve or be able to save it?
A: We try to save the valve when at all possible but if her annulus (the ring around the pulmonary valve) is to small we will have to cross cut the pulmonary valve or remove it.
Q: What is the size of the annulus in an infant her age?
A: About 10 - 12 millimeters
Q: What is the size of Kelseys?
A: According to the echo it is about 5 millimeters, but we won't know for sure until we get in there.
Q: If you have to remove the valve what is the risk of her right ventrical enlarging?
A: Your cardiologist will monitor her. When it gets to a certain size she will then require a valve replacement. I have had some as early as 3 years old and others as old as 25. Typically speaking on average at about 15 years of age. This is a slow process and takes many years for this to develop.
Q: What about the damage caused from the right ventrical enlargement?
A: Once the valve is replaced the heart will return back to it's normal size, as long as it doesn't get to enlarged. That is why she will be monitored by her cardiologist.
Q: What at happens if we elect not to do surgery?
A: Some officials would intervene.
Q: Will she be limited to sports or other activities?
A: Definitely not, however as she gets into or after highschool she may not be able to be a marathon runner. She would get tired easier than someone with a normal heart.
We are tenativly looking at the surgery on September 1st or September 15th. We are waiting a call back from Dr. Tam's secretary to find an opening in his schedule. We will know tomorrow.
As you may imagine we had a trillion questions.
Q: What is his mortality rate?
A: I can't remember the last one, but it is really low, about 1%
Q: How many TOF surgeries have you performed?
A: I have been doing this for 13 years and perform about 300-400 a year.
Q: What are the risks?
A: Oxygen saturation during surgery with heart-lung machine, mortality, and blood transfusion, which could contain disease such as Aids.
Q: How long should we wait before we do surgery?
A: There are no medical advantages that we know of to wait for her to reach a certain weight. I would recommend in the next 2 to 3 weeks.
Q: Will they remove the valve or be able to save it?
A: We try to save the valve when at all possible but if her annulus (the ring around the pulmonary valve) is to small we will have to cross cut the pulmonary valve or remove it.
Q: What is the size of the annulus in an infant her age?
A: About 10 - 12 millimeters
Q: What is the size of Kelseys?
A: According to the echo it is about 5 millimeters, but we won't know for sure until we get in there.
Q: If you have to remove the valve what is the risk of her right ventrical enlarging?
A: Your cardiologist will monitor her. When it gets to a certain size she will then require a valve replacement. I have had some as early as 3 years old and others as old as 25. Typically speaking on average at about 15 years of age. This is a slow process and takes many years for this to develop.
Q: What about the damage caused from the right ventrical enlargement?
A: Once the valve is replaced the heart will return back to it's normal size, as long as it doesn't get to enlarged. That is why she will be monitored by her cardiologist.
Q: What at happens if we elect not to do surgery?
A: Some officials would intervene.
Q: Will she be limited to sports or other activities?
A: Definitely not, however as she gets into or after highschool she may not be able to be a marathon runner. She would get tired easier than someone with a normal heart.
We are tenativly looking at the surgery on September 1st or September 15th. We are waiting a call back from Dr. Tam's secretary to find an opening in his schedule. We will know tomorrow.
Tuesday, August 15, 2006
Kelseys Cardiologist Appointment
Kelsey had a follow up visit today with the cardiologist. She weighs 8lbs 4 oz and is now 20 inches long.
When we brought her home from the hospital she had an oxygen or Pulse OX reading of 95%. Pulse oximetry is a simple non-invasive method of monitoring the percentage of haemoglobin (Hb) which is saturated with oxygen. In the last month it dropped to about 88% and last week it was at 84%. Today it read 80%. This means her oxygen rich blood is deteriorating. She is slowly getting less oxygen rich blood into her bloodstream.
Tomorrow we have an appointment with the heart surgeon from Cooks Children's Hospital in Fort Worth, Tx. The surgeon is Dr. Vincent Tam. We will probably be scheduling a date for the surgery.
On another note Nancy has developed Mastitis. Mastitis means that the breast is inflamed, and there is swelling, redness, tenderness and pain. The doctor says it is most likely caused from bacteria carried by Kelsey. Some of her symptoms have been flu-like symptoms, chills and fever.
When we brought her home from the hospital she had an oxygen or Pulse OX reading of 95%. Pulse oximetry is a simple non-invasive method of monitoring the percentage of haemoglobin (Hb) which is saturated with oxygen. In the last month it dropped to about 88% and last week it was at 84%. Today it read 80%. This means her oxygen rich blood is deteriorating. She is slowly getting less oxygen rich blood into her bloodstream.
Tomorrow we have an appointment with the heart surgeon from Cooks Children's Hospital in Fort Worth, Tx. The surgeon is Dr. Vincent Tam. We will probably be scheduling a date for the surgery.
On another note Nancy has developed Mastitis. Mastitis means that the breast is inflamed, and there is swelling, redness, tenderness and pain. The doctor says it is most likely caused from bacteria carried by Kelsey. Some of her symptoms have been flu-like symptoms, chills and fever.
Sunday, August 13, 2006
Saturday, August 12, 2006
Megan and Baby Kelsey
A proud big sister holding baby sister Kelsey. This was the 3:00AM shift. Dad was sleeping soundly. Sure is nice having women around.
Kelsey Update
Kelsey had a 2nd opinion on her TOF. The doctor concurred with her 1st cardiologist that surgery was imminent. We have an interview with the surgeon on August 16th. We will find out more about the surgery and what to expect.
The Diagnosis
Tetralogy of Fallot
What It Is
Tetralogy of Fallot has four key features. A ventricular septal defect (a hole between the ventricles) and many levels of obstruction from the right ventricle to the lungs (pulmonary stenosis) are the most important. Also, the aorta (major artery from the heart to the body) lies directly over the ventricular septal defect, and the right ventricle develops thickened muscle.
Because the aorta overrides the ventricular defect and there's pulmonary stenosis, blood from both ventricles (oxygen-rich and oxygen-poor) is pumped into the body. Sometimes the pulmonary valve is completely obstructed (pulmonary atresia). Infants and young children with unrepaired tetralogy of Fallot are often blue (cyanotic). The reason is that some oxygen-poor blood is pumped to the body.
Surgical Treatment
Tetralogy of Fallot is treated surgically. A temporary operation may be done at first if the baby is small. Complete repair comes later. Sometimes, the first operation is a complete intracardiac repair.
What It Is
Tetralogy of Fallot has four key features. A ventricular septal defect (a hole between the ventricles) and many levels of obstruction from the right ventricle to the lungs (pulmonary stenosis) are the most important. Also, the aorta (major artery from the heart to the body) lies directly over the ventricular septal defect, and the right ventricle develops thickened muscle.
Because the aorta overrides the ventricular defect and there's pulmonary stenosis, blood from both ventricles (oxygen-rich and oxygen-poor) is pumped into the body. Sometimes the pulmonary valve is completely obstructed (pulmonary atresia). Infants and young children with unrepaired tetralogy of Fallot are often blue (cyanotic). The reason is that some oxygen-poor blood is pumped to the body.
Surgical Treatment
Tetralogy of Fallot is treated surgically. A temporary operation may be done at first if the baby is small. Complete repair comes later. Sometimes, the first operation is a complete intracardiac repair.
New Addition
Hello my name is Kelsey. I was born on July 6 2006. I weighed 5lbs 12oz, and I was 19 inches long. I was born with lots of hair from the get go. I was born with a heart defect known as Tetralogy of Fallot. Everyone talks about how beautiful I am. As you can see I look just like my daddy.
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