Musings of a Heart Family: One More Day

Sunday, August 10, 2008

One More Day

Sometime tomorrow afternoon, my baby may be losing his trach. Dr. White will make the call when he rounds Monday. I have requested he not decannulate until I'm able to get to the hospital. I have a meeting at 9:30 that should only last a short time, then it's off to the hospital with my mother in law and older boys.

I'm scared, nervous, anxious, thrilled and sad. This is a new chapter in our lives. No more machines, no more oxygen, no more suction machine. No more supplies taking up his entire room. He went in the hospital nearly a month ago a little baby with a trach. He's coming home a little boy breathing on his own!

Here he is, showing off his cap.

2 comments:

Susie said...: Showing off his cap AND smiling!!! How'd you get that smile on the camera!! You need to remember whatever trick it was! YAY!!!; August 10, 2008 at 10:19 PM
Awesome Mom said...: How awesome! I ma sure you are going to love being freed from the machines and that Tommy will adore being able to have more freedom of movement. Just think of all the fun adventures you can have together now.; August 10, 2008 at 11:58 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

Sunday, August 10, 2008

One More Day

2 comments:

Diagram of Tommy's Heart Defects

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