Musings of a Heart Family: Busy weekend/ Slide show for Tommy's first birthday party

Tuesday, October 2, 2007

Busy weekend/ Slide show for Tommy's first birthday party

What a weekend. I am so glad to see it over and done with! It started Friday with Tommy's well child check and shots. It got stretched out longer than I had planned. It just so happened to be the one day Rob could get overtime and I get stuck at the doctor's office. In the end, it worked out okay. Saturday, I WAS going to do the heart walk, but it wasn't meant to be. I really wasn't in the mood to haul around a wagon full of oxygen tanks just to be sure we had enough.

Sunday was Tommy's birthday party. I didn't think I was going to be able to make it to my own son's party, but that had a way of working itself out as well and it was an awesome time!

Today, we were back at the doctors office for another round of shots. This time it was for RSV and the flu. Tonight he developed a lowgrade fever for the first time since I've had him home (December last year!!!), so I was a little panicked. A quick phone call to the on call doctor didn't make me feel much better, because she automatically wanted us to come to the germy ER at 2 am. No thank you! I'll pass on that one. I gave him infant Tylenol and he was just fine. I'll call his regular doctor in the morning to just double check.

So there. I'm so beat! Here is a slide show from Tommy's first birthday party! Enjoy!
View this slideshow created at One True Media

View this slideshow created at One True Media

Tommy's First Birthday Party

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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

Tuesday, October 2, 2007

Busy weekend/ Slide show for Tommy's first birthday party

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