Musings of a Heart Family: Summer is Here!

Time to break out the flip flops!

Playing in the rain

Brandon before his haircut

Matthew's new haircut

Brandon's haircut

My sweet, silly boys

Brandon and Matthew, May 2009

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 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 meet in one place in his heart, mix together, and recirculate. This gives him low oxygen saturation levels in his blood.

His poor swallow, also know as "dysphagia" is caused by Cricopharyngeal Dysfunction. The muscle at the top of his esophagus works sporadically. It causes Tommy to aspirate his saliva into his lungs. For this reason, Tommy is 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 now has a condition called severe subglottic stenosis. This is scar tissue below the vocal cords. He cannot breathe without his trach.

The aspirations caused another condition with the generic term "lung disease". His brochial tissues are inflamed causing Pulmonary Hypertenison. He takes a combination of medicines and requires oxygen 24 hours a day.

Musings of a Heart Family

Thursday, May 28, 2009

Summer is Here!

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Tommy's First Year

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Tommy Learning to Use His Mouth

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