Karyn-marie was born November 28, 2008. She was diagnosed with Down Syndrome and pulmonary hypertension while in the NICU. She was born three weeks early and was discharged when she was one week old. My 20 month old son had RSV, and ineviteably she was sick five days later. I took her to the doctor on December the 18th, her O2 sats were in the 70's and we were taken by ambulance to Egleston Childrens Hospital. We spent 15 days there, on Christmas day we noticed that she was having trouble while feeding and they diagnosed her with reflux, her barium swallow showed that she was aspirating thin and nectar thick liquids, they placed an NG tube and instructed me to give her honey thick liquids and pace her. We were discharged on January the 3rd and were readmited January the 6th because she aspirated the honey thick liquid and went into respiratory distress. She was intubated in trauma and taken to PICU. We were in PICU for almost 5 weeks. She has had a Fundoplication with a G-tube, 2 bronchoscopy's, and the attempted to extubate her 3 times and she continued to fail extubation, she had a tracheostomy 8 days ago, and in the last 24 hours has done much, much better. She was finally weaned off of pressure support although the doctors want to keep her on vetilation and CPAP at night, so she can rest. We were transferred to the TICU today. I'm just happy to have her. She has the sweetest smile, and I'm amazed at her strength.
