Tommy Dereksen
TrachKid Profile
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Tommy is a 33 weeker preemie born with severe multiple congenital heart defects and a birth defect to his esophagus called Congential Cricopharyngeal Achalasia (CCA), also known as cricopharyngeal dysfunction. At 4 weeks old, he had his first open heart surgery. A combination of prematurity and his CCA caused him to fail extubation 3 times. He was on the ventilator for 5 weeks. During this time, he developed an infection in his bloodstream, an infection in his lungs that lead to one filling with fluid while the other lung collapsed. He had a Nissen Fundoplication to stop his severe reflux that was contributing to the failed extubations, and finally after 5 weeks, his trach.
Tommy getting his trach was such a blessing because it meant we could finally hold him and take him home! Unfortunately, being a preemie on a vent for 5 weeks and not being held took its toll on Tommy. He developed sensory issues and required therapy. He has had occupational and physical therapy every week since he was about 4 months old.
Tommy spent the next few months growing and getting stronger. At 9 months old, during a heart cath in preparation for yet another heart surgery, we learned that his lungs were damaged from aspirations due to his CCA and he could not have the particular surgery as we had hoped. Instead, he had a modification of his previous surgery to give him a chance to grow and for his lungs to heal. Tommy became oxygen dependant at this time. In the meantime, we would work on getting his aspirations under control. In December 2007, he underwent a surgery to correct his swallow. So far the procedure has held up and seems to be doing its job.
In more recent months, Tommy has had a double staged LTP. It was a success, but since it has been a year since his last heart surgery, we may have to stop our steps to decannulation long enough to procede with the next step of his heart repair. Once he is recovered, there shouldn't be any reason to procede with our journey to decannulation.
History
- Blog
- View recent blog entries
- Member for
- 2 years 11 weeks
Location
- Country
- United States
- State/Province
- South Carolina
