This is the life of one kid that is a Congenital Heart Defect survivor and is battling through life with sensory integration disorder.
Showing posts with label VCH. Show all posts
Showing posts with label VCH. Show all posts
Friday, February 01, 2008
Luncheon
February 14, 2008 - CHD Awareness Day Lunch from 11:00am to 12:00pm at Vanderbilt Children's Hospital in Nashville, TN
Labels:
CHD awareness,
VCH
Friday, March 04, 2005
At VCH
We are now at Vanderbilt children's. It was weird about how the transport team was going on about how they have all the equipment in the ambulance that is in the NICU and if something were to happen, they would be able to help him.
I don't completely understand, it's just a narrow spot, not like the blood isn't getting there, it's just making his heart work a little harder.
I am extremely thankful for the nurse I had, she called Dr. Barnett and got him to release me so that I could go with Benji to VCH. She was very understanding and got us loaded up and on our way very quickly. We got over to the hospital about the same time Benji did but then we had to wait for them to transfer him into NICU and make sure he was stable.
We have called many different people and couldn't get ahold of anybody. Tom and Nancy Crow from church got our message and came up to the hospital, so did Aunt Wanda. It was so odd, people we can usually just think about and there they are, and tonight when we needed somebody we went hours with nothing.
The feeling of nothingness was unbearable. We felt as if our world was falling apart and we had nobody with us to hold our hands. The heart defects were so completely unexpected we were not prepared at all. It was a blessing that the Crow's gave up their evening to sit with us that first night at Vanderbilt. We did not know how long we would be there.
I don't completely understand, it's just a narrow spot, not like the blood isn't getting there, it's just making his heart work a little harder.
I am extremely thankful for the nurse I had, she called Dr. Barnett and got him to release me so that I could go with Benji to VCH. She was very understanding and got us loaded up and on our way very quickly. We got over to the hospital about the same time Benji did but then we had to wait for them to transfer him into NICU and make sure he was stable.
We have called many different people and couldn't get ahold of anybody. Tom and Nancy Crow from church got our message and came up to the hospital, so did Aunt Wanda. It was so odd, people we can usually just think about and there they are, and tonight when we needed somebody we went hours with nothing.
The feeling of nothingness was unbearable. We felt as if our world was falling apart and we had nobody with us to hold our hands. The heart defects were so completely unexpected we were not prepared at all. It was a blessing that the Crow's gave up their evening to sit with us that first night at Vanderbilt. We did not know how long we would be there.
Thursday, March 03, 2005
SHOCK
The cardiologist saw Benji. My first impression of her is I don't like her. She was so blunt and didn't think about how we would feel. Benji has something wrong with his heart. He has a coarctation of his aorta and his aortic valve is bicuspid it is also thick. They have put him on PGE(?) it will force his PDA to stay open so his body gets blood. They are tranfering him to Vanderbilt Children's Hospital now.
I am scared, I tried to tell everybody something was going on and they said I was wrong. Now this? He did nurse this afternoon. I was starting to relax until the cardiologist came in here. Now my world feels like it is shattering.
My cousin Madeline was born with heart defects and had surgery and it was repaired and she's fine. She's 18 now. She has Turner's Syndrome but she is doing fine. I think she is even going away to college.
God, please protect my little boy.
I am scared, I tried to tell everybody something was going on and they said I was wrong. Now this? He did nurse this afternoon. I was starting to relax until the cardiologist came in here. Now my world feels like it is shattering.
My cousin Madeline was born with heart defects and had surgery and it was repaired and she's fine. She's 18 now. She has Turner's Syndrome but she is doing fine. I think she is even going away to college.
God, please protect my little boy.
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