Today marks our 5th Congenital Heart Defects Awareness Week. 5 years ago today we were 8 days out from Aiden's first open heart surgery for Tetralogy of Fallot and a complete A/V Canal Defect.
Congenital Heart Disease is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide.
Despite the fact that CHD affects approximately 1.8 millions families in the U.S., a relatively small amount of funding is currently available for parent/patient educational services, research, and support.
By sharing our
experiences and providing information, we hope to raise public awareness about conditions that affect approximately 40,000 babies each year in the United States alone.
It is our sincere hope that efforts to educate the public will result in improved early diagnosis, additional funding for support and educational services, scientific research, and access to quality of care for our children and adults.
We spent the day today at the very same hospital where Aiden underwent his OHS. Aiden had dental surgery today. While the hospital has gone some major renovation since then, the OR has remained the same. The same exact painting of Snoopy and the Peanuts gang is still on the same wall. I was asked this time if I wanted to walk Aiden back - completely back - to the operating table while he was placed under general anesthesia. I declined.
I still remember vividly the emotions of handing my 5 month old baby to a stranger. A stranger who was going to be with my child while his tiny heart was placed in the hands of a surgeon I had met only the night before. The memories of spending 8+ hours in a tiny waiting room while my baby laid on a table fighting for his life.
The anxieties came back being in that room with Snoopy. Chris walked back with Aiden in my place. For that I am grateful. He sat there and held the gas mask while Aiden went to sleep. There was no way I was able to do that myself.
The staff asked if wanted to know where anything was. After spending 5 and a half weeks in that hospital, I know it backwards, forwards and sideways.
There are floors I avoid, one in particular - the 8th floor. Which used to be PICU. I don't know if it is still the same floor, but I avoid it anyhow. The dental clinic is located on that floor, just in the new part of the hospital. I can totally avoid the patient rooms and try not to think about my child laying in his room while machines kept him alive.
Today was just a simple procedure, complicated by Aiden's previous heart history. He had total tooth restoration since he likes to grind his teeth. One root canal, extraction of a molar (his first tooth BTW!) a few crowns and fillings and 4 hours later....
Cardiology also got to play around. Dr. Pediatric Heart Electrician wanted to do a sedated echo while Aiden was under.
Aiden wasn't too happy coming out of his drug induced nap. His mouth was full of blood and he has to drink before being released. Which caused the child to swallow all that blood and then promptly projectile return it back. Yes, that was lovely. 2 hours in recovery, a dose of Zofran, and a sippy cup of Sprite finally agreeing with the child and we were sent happily on our way.
He spent the 3 hours of driving time watching
Chuggington in a stupor.
Congenital Heart Disease is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide.
Despite the fact that CHD affects approximately 1.8 millions families in the U.S., a relatively small amount of funding is currently available for parent/patient educational services, research, and support.
By sharing our experiences and providing information, we hope to raise public awareness about conditions that affect approximately 40,000 babies each year in the United States alone.
It is our sincere hope that efforts to educate the public will result in improved early diagnosis, additional funding for support and educational services, scientific research, and access to quality of care for our children and adults.
We spent the day today at the very same hospital where Aiden underwent his OHS. Aiden had dental surgery today. While the hospital has gone some major renovation since then, the OR has remained the same. The same exact painting of Snoopy and the Peanuts gang is still on the same wall. I was asked this time if I wanted to walk Aiden back - completely back - to the operating table while he was placed under general anesthesia. I declined.
I still remember vividly the emotions of handing my 5 month old baby to a stranger. A stranger who was going to be with my child while his tiny heart was placed in the hands of a surgeon I had met only the night before. The memories of spending 8+ hours in a tiny waiting room while my baby laid on a table fighting for his life.
The anxieties came back being in that room with Snoopy. Chris walked back with Aiden in my place. For that I am grateful. He sat there and held the gas mask while Aiden went to sleep. There was no way I was able to do that myself.
The staff asked if wanted to know where anything was. After spending 5 and a half weeks in that hospital, I know it backwards, forwards and sideways.
There are floors I avoid, one in particular - the 8th floor. Which used to be PICU. I don't know if it is still the same floor, but I avoid it anyhow. The dental clinic is located on that floor, just in the new part of the hospital. I can totally avoid the patient rooms and try not to think about my child laying in his room while machines kept him alive.
Today was just a simple procedure, complicated by Aiden's previous heart history. He had total tooth restoration since he likes to grind his teeth. One root canal, extraction of a molar (his first tooth BTW!) a few crowns and fillings and 4 hours later....
Cardiology also got to play around. Dr. Pediatric Heart Electrician wanted to do a sedated echo while Aiden was under.
Aiden wasn't too happy coming out of his drug induced nap. His mouth was full of blood and he has to drink before being released. Which caused the child to swallow all that blood and then promptly projectile return it back. Yes, that was lovely. 2 hours in recovery, a dose of Zofran, and a sippy cup of Sprite finally agreeing with the child and we were sent happily on our way.
He spent the 3 hours of driving time watching Chuggington in a stupor.