Musings of a Heart Family: New Flowers

Thursday, April 16, 2009

New Flowers

I picked these out for Tommy today. Monday will be 8 months....

2 comments:

Deanna said...: How nice picture!! Love the heart shaped flower decoration!! I have seen most beautiful bouquet at 1800Flowers...; April 25, 2009 2:34 AM
Rene said...: Thank you, but I will confess, I got them at Walmart for about $7. They were so beautiful and just perfect for Tommy!; April 25, 2009 10:41 AM

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, April 16, 2009

New Flowers

2 comments:

Welcome To Our Page!

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Tommy Dereksen Memorial Fund

Tommy's First Year

Remembering Tommy

Tommy Learning to Use His Mouth

Tommy's Diagnosis

Diagram of Tommy's Heart Defects

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