My son Thomas "Tommy" Lee Dereksen came crashing into the world 7 weeks premature with a fighter spirit and a wonderful cry. Diagnosed during my pregnancy, we were prepared he would have heart defects. His first echo confirmed this and gave us our complete diagnosis. Double Inlet Left Ventricle, Transposition of the Great Arteries, Severe Pulmonary Stenosis, Ventricle Septal Defect and Patent Ductus Arteriosus. He would spend the first 79 days of his life in the hospital not dealing with being a preemie, but having heart surgery, being diagnosed with a birth defect to his esophagus, getting a G-tube and getting a tracheostomy (trach). Recovery after heart surgery was terrible, filled with infections and lung issues. We were so happy to finally have our little guy home!

For the next 6 months, we learned to adjust to a medically fragile child. Occupational and physical therapies were started. Tommy dealt with sensory issues and loathed touch. His care was 24/7. He was hooked to monitors at home, fed with a pump, and given medications about every 4 hours around the clock. Despite it all, Tommy grew and learned to love us as much as we did him. He smiled for the first time at 5 months old, and allowed me to rock him to sleep for the first time at 7 months old. We even took a trip out of state to visit our families. Finally the time came for the second stage of his heart surgery. The day came for Tommy's heart cath. Everyone was excited to see the day Tommy would have his Glenn and be on his way to a repaired heart. However, his heart cath gave us very bad news. Tommy had secondary pulmonary hypertension, scarring in his lungs, reactive airway disease, and asthma! The Glenn was out of the question. Instead, Tommy's surgeon revised his shunt to give Tommy's body time to grow and hopefully outgrow his lung issues. There was a downside. Tommy would now be oxygen dependant. He came home tethered to about 15 feet of blue tubing and an oxygen concentrator, but he was alive and doing well!

The next year was spent growing, laughing and learning. He had his therapies every week and eventually learned to sit on his own and how to stack and throw things. He had surgery on his esophagus to learn to swallow and began speech therapy. He also had surgery on his trachea so that his airway could be open enough to learn to speak and eventually get out his trach. Tommy learned to sign several words and to verbalize just one, "Mama". He became a huge fan of his exersaucer, signing "jump" several times a day until we gave in. He would clap with delight and blow us kisses whenever we obliged him.

In July, 2008, Tommy went into the hospital. He was treated for a bout of pseudomonas, which is a bacteria that lives in the trachea and can flare up with illness. After his recovery, his doctors proceeded with a tonsillectomy and adenoid removal to give him an even larger airway. Tommy did wonderfully! A few days later, he was off oxygen for the first time in a year and breathing on his own with his trach capped off. We began discussing the Glenn again, but the trach had to come out first. His doctors didn't want to risk infection with an incision that close to the trach site. The trach came out on a Monday and on Wednesday we were home! Being home was short-lived. That Friday, Tommy was admitted again for respiratory distress. His trach was put back in. He was again requiring oxygen and no one was able to tell me why. He was very sick and I was not getting the answers I was looking for. I got the answers in a way no parent should ever get them. By autopsy. Tommy died Wednesday, August 20, 2008. One minute he was sitting in his crib, playing and watching his favorite movie on TV. He had a breathing treatment and again went into respiratory distress. He did not recover and a crash cart was called. The team worked on him for 45 minutes, but he was already gone. The autopsy showed Tommy had been in heart failure and an undiagnosed case of bronchopneumonia caused his already sick heart to go into a lethal arrhythmia. He was 5 days away from being 23 months old. 

Chanin Rene Dereksen - Tommy's Mother http://www.musingsofaheartfamily.blogspot.com/
http://www.carepages.com/

Tommy Dereksen Memorial Fund

http://www.causes.com/causes/312677?recruiter_id=16595106Thomas