suzmus27
TrachKid Profile
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Born 4/23/08 at 36 weeks. Diagnosed clinically at birth with Cornelia de Lange Syndrome (CdLS) - a rare genetic syndrome - Pierre Robin sequence and later with Hemihypertrophy (left side of body is bigger than right side) which makes her more susceptible to childhood tumors. She has been tube fed since birth and has yet to pass an OPMS - still at high risk for aspiration. She was trached in September of 2008 after it took the doctors 3 hours to intubate her for surgery to have her jaw moved forward (mandibular distraction). Aside from the G-tube placement, tracheotomy and jaw surgery, she has also had surgery to repair a perforated intestine (from an NJ tube) as well as a cleft palate repair.
She has severe GERD (reflux) as well as hypertonia, hearing loss, nearsightedness, microcephaly. She is currently on room air during the day on her Passy Muir (when she is not sick with tracheitis!) and started cap trials. She is on the vent at night for C-PAP only due to apnea but her last sleep study revealed progress. She is developmentally delayed due to her syndrome and also 5+ months of hospitalization in her 14 months of life, but is a very sweet and funny child :)
History
- Blog
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- Member for
- 2 years 33 weeks
Location
- Country
- United States
- State/Province
- Georgia
