Musings of a Heart Family: Remembering Tommy~ Sept 25, 2006-Aug 20, 2008

Wednesday, August 19, 2009

Remembering Tommy~ Sept 25, 2006-Aug 20, 2008

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3 comments:

Queen Mommy said...: Beautiful, Rene. I have tears coursing down my face, as I'm sure you did while you were putting the video together. Tommy had amazing eyes. Eyes that speak volumes about all the LIFE he packed into his (almost) 2 years. Sending you hugs and prayers!

Also, I'm so sorry I missed saying this on your birthday yesterday. Happy Birthday! Glad you were able to do something special.; August 19, 2009 at 9:17 AM
Dottie said...: That was a great tribute to Tommy! You did a great Job. Happy Belated birthday. I have been on in months but I wanted to check in on your blog. Your always a inspiration to me. Hang in there. I'm praying for you and your family; August 19, 2009 at 7:25 PM
Cherie said...: Hi I just watched your montage of Tommy (via tracheostomy.com). You are one brave and strong mother/family. You can be proud of you, your kids and your little angel. He just looked to have a fabulous personality.

Really appreciate your comments and feedback on the site - it is really valued. Please do keep involved. I hope it helps with the grief process - in some way.

Lots of Love
Cherie xxooxx
Mom to Mitchell (10.12.03). Pentalogy of Cantrell and still trached and vent dependent overnight.; August 20, 2009 at 11:06 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 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

Wednesday, August 19, 2009

Remembering Tommy~ Sept 25, 2006-Aug 20, 2008

3 comments:

Diagram of Tommy's Heart Defects

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