Caleb Nelson
TrachKid Profile
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This is Caleb Grant Nelson. He was born full term on August 26,2002.When Caleb was three weeks old he suddenly had respiratory arrest at home. He was placed on life support at Cottage Hospital and flown to Dartmouth Hitchcock Hospital to the Pediatric Intensive Care Unit . Caleb remained on life support for two weeks. During this time it was discovered that Caleb had vocal cord paralysis, adrenal insufficiency, pulmonary hypertension, possible seizure disorder, acid reflux, and constipation concerns. On Halloween 2002, Caleb had a tracheotomy for access to be ventilated during sleep and illnesses.
Trying to find a diagnosis for Caleb meant he had to endure a spinal tap, two muscle biopsies, exhausting blood draws, repetitive sleep studies, and even a trip to the Children's Hospital in Boston.
On December 4, Caleb came home. But, not without extensive training for his family. We are approved 96 hours a week of RN care, but it's hard to find nurse's for the low pay. Caleb has a speaking valve, but he does not tolerate it at this time. He relies on American Sign language to communicate with us and is vocalizing past his vocal cords. He relearned how to eat orally and had the feeding tube removed.
Just after Caleb's first birthday, he was diagnosed with Congenital Central Hypoventilation Syndrome. It is a rare, life long genetic disorder . With only two hundred children in the U.S. diagnosed, there is minimal research and information. A lot of children have been misdiagnosed with congenital heart disorders or even worse S.I.D.S.. This disorder essentially means Caleb's automatic control of his respiratory drive is slowed at sleep. He continues to need ventilator support at sleep time. This disorder tends to affect the right ventricle in the heart, slows the colon down, or even some children have been diagnosed with Hirschsprungs disease. Children may have optical problems and issues with other organs. There are also some suggestions that these children develop abdominal tumors. There are no signs at this point that Caleb has any organ or brain damage.
Caleb has long surpassed all of the Doctor's expectations. He lives in Ryegate, Vermont with his parents, Grant & Heather and his big sister, Devyn. Caleb's biggest joy is interacting with the people around him and following his big sister around.
Heather Nelson
History
- Blog
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- Member for
- 3 years 35 weeks
Location
- Country
- United States
- State/Province
- Vermont
