Musings of a Heart Family: This is What True Love is All About!

Friday, January 30, 2009

This is What True Love is All About!

This is the CHD Awareness video from the God's Special Little Hearts website. Tommy is in the video. Forget the snow, forget the ice... THIS is what is important! Please come walk with us!

2 comments:

Erin said...: When is the walk, and is it national? That video was amazing, and made me cry.; January 30, 2009 at 12:54 PM
Rene said...: The walk is Feb. 7th in Owenton, KY. It is a local walk, but World CHD Awareness Week is from Feb 7-14. Feb 14 is also World CHD Awareness Day.; February 1, 2009 at 1:42 PM

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Welcome To Our Page

This page is a place for me to empty the thoughts out of my head when they begin to overflow!

I am mom to 4 boys. Our youngest, Tommy was born with complex congenital heart defects, and cricopharyngeal achalasia (poor swallow). He was medically fragile and required a Gtube to eat, a trach to breathe and oxygen 24/7. I started this blog when he was just an infant, blogging about all of the ups and downs of our family.

Sadly, Tommy passed away in August 2008. His heart went into lethal arrhythmia from undiagnosed bronchopneumonia. Our world was shattered. I continue to blog as we adjust to life without our sweet Angel.

Tommy's Diagnosis

Tommy was born 7 weeks premature with a combination of congenital heart defects and a poor swallow. His heart diagnosis is as follows: Double Inlet Left Ventricle with Transposition of the Great Arteries, Pulmonary Stenosis, Ventricle Septal Defect, and Patent Ductus Ateriosis. This is also known as "single ventricle" or "univentricle". It basically means the blood containing oxygen and the blood without oxygen met in one place in his heart, mixed together, and recirculated. This gave him low oxygen saturation levels in his blood. His poor swallow, also know as dysphagia was caused by Cricopharyngeal Dysfunction. The muscle at the top of his esophagus worked sporadically. It caused Tommy to aspirate his saliva into his lungs. For this reason, Tommy was fed exclusively by a feeding pump. Tommy had open heart surgery at 4 weeks old, and because of his poor swallow, he could not make it off of the ventilator for 5 weeks. He required a procedure called a Tracheotomy to breathe on his own. Because of the breathing tube, he developed a condition called severe subglottic stenosis. This is scar tissue below the vocal cords. He could not breathe without his trach. The aspirations caused another condition called chronic lung disease. His brochial tissues were inflamed causing Pulmonary Hypertenison and asthma. He took a combination of medicines and required oxygen 24 hours a day.

Musings of a Heart Family

Friday, January 30, 2009

This is What True Love is All About!

2 comments:

Diagram of Tommy's Heart Defects

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