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Jennaro
TrachKid Profile
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Sean was full-term and born via c-section. On his third day of life, Sean started turning blue and retracting when feeding and lying supine. He also started presenting with stridor. He was sent to the NICU where he was diagnosed with a paralyzed left vocal cord. An MRI showed no neurological abnormalities. We were taught to feed him in a special way that decreased his likelihood of desating, and that was his only medical requirement. After 1 1/2 weeks, he was sent home (without even an O2 monitor). At 6 weeks of age, at a routine ENT visit, our doctor noticed that Sean had developed severe Laryngomalacia. He ordered a bronchioscopy and an MRI. After a week in the PICU, with his ability to breathe getting more and more impaired, it was decided that Sean would immediately undergo a tracheostomy. That happened in early July 2009. He was sent home a week later. He did not need any supplemental oxygen, just humidification at night when he slept.
Because Sean exhibited some asymmetry in his face and hypotonia in his upper body, neurology and genetics were consulted. He was tested for several genetic syndromes, but all results were negative. Neurology saw him in September 2009, but did not think he followed any patterns for any neurological syndromes. His MRI was normal. He'll be seen by neurology in March 2010.
In August 2009, Sean started retracting again and was sent to the emergency room. A chest x-ray showed inflamation in his lungs, so he was seen by pulmonary and GI. Pulmonary prescribed Pulmicort and Atrovent via nebulizer (as well as Albuterol as needed). GI prescribed Prilosec as a precautionary measure - to prevent reflux and aspiration.
And that is where Sean is - we don't know why he has these problems with his airway and we don't know how long he will have the trach - though his ENT says it will come out before he turns 2.- Gender: Male
- Demographic Region: North America
- Siblings: Two
- Medical Conditions: Laryngomalacia, vocal cord paralysis
History
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- Member for
- 1 year 2 days
Location
- Country
- United States
- State/Province
- Massachusetts
