Musings of a Heart Family

Saturday, April 26, 2008

We've made it to the floor and he's feeling okay! I had to go find some toys because he was really, realllllly bored!

He's doing well and we're still probably going home Monday, possibly Tuesday. I'm glad we're having some peace and quiet. No more ICU beep, beep, beeps. I don't see how anyone gets well in an ICU. It's one of the noisiest places I've ever been in the hospital. Tommy could been in the cafeteria at lunchtime and had a better chance at resting!

Now that this big procedure is behind us, its time to start gearing up for HEART SURGERY! Gotta love Tommy and all his scars!

1 comment:

Anonymous said...: good job, tommy! glad things are going well! - your site is great!
- thai, david and mina loy; April 26, 2008 at 11:46 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

Saturday, April 26, 2008

1 comment:

Diagram of Tommy's Heart Defects

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