TrachKids.org

TrachKid Profile

Ally has faced over 15 surgeries already in her short five years. Her twin sister Katie is doing well and has been a big support and love in her life. Someday we hope and pray that she will join the decannulated group. Ally had her trach placed when she was 5 months old for Laryngomalacia. Ally was in the NICU for five months before she finally came home to us. Both my girls faced premie complications, needed apnea monitoring, med, and oxygen, but Ally continues to have many medical and surgical challenges. Ally is on room air but continues to need an oxygen saturation/heart rate monitor and her feeding pump at night. We are working hard with her trying to get her take po only during the day, but she was g tube or NG tube fed most of her life due to chronic battles with respiratory issues.
Ally has had surgery on her eyes to fix her ROP, cleft palate repaired, a Nissen Fundoplication due to vomiting when she was a baby, she was born with hypothyroidism but she out grew it, She had surgery to put a VP shunt in her head to help correct the hydrochephalus, jaw distraction surgery to pull her jaw forward, and ear surgery to open one of her stenotic ears to name a few. A few days before she was suppose to come home she had a mucous plug and coded, we almost lost her.
She has also had genetic work up for Treacher Collins, and one other which were neg. We are currently awaiting genetic results and a nasal scraping for PCD (Primary Ciliary Dyskensia). Ally currently wears glasses and a hearing aide in the left ear, she does not hear out of her right ear. Hopefully we will find out in the next few months whether or not her surgery last month was successful and we can put a hearing aide in her right ear. Our girls are our love and joy, I not only get to be a nurse at work but one at home, but we have come a long way with the help of friend and family.

• Gender: Female
• Demographic Region: North America
• Siblings: Twins
• Medical Conditions: Laryngomalacia, Subglottic Stenosis, Preemie, G-Tube, Bronchopulmonary dysplasia, Patent ductus arteriosus, Retinopathy of prematurity, Cleft Palate, Hydrocephalus, Intraventricular Hemorrhage, Bilateral Hemifacial Microsomia, Hearing Impaired
• Ethnicity: Caucasian

History

Blog

View recent blog entries

Member for

2 years 7 weeks

Location

Country

United States

State/Province

Massachusetts