Grace Bendix
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My daughter's name is Grace Bendix. She is 3 months old. We had a normal pregnancy and delivery. We both went home after our stay at the hospital. When she was seven weeks old she was turning blue. We took her into the hospital and that night she was having apneic episodes. They rushed her in the PICU and intubated her. They also learned that her PDA was open. While she was intubated her PDA closed and they extubated Grace. It was not successful. They had to re-intubate her and give her 24 hours of steriods to decrease the swelling in her airways. She was ex-tubated for the second time and she lasted 3 days without the tube. Gracie's saturations were just not holding when she went to sleep. They did a bronchoscopy and found nothing. Finally, after 3 weeks of searching, they did a sleep study and found that Grace had Congenital Central Hypo Ventilation. They told us that the only way to correct this was a tracheostomy. We were not happy with that and transferred her to the Mayo Clinic for a second opinion. Our stay there was terrific, they tried a drug on her that has worked in the past with Central Apnea but she did not respond to it. We flew back to Luthern General and scheduled to have the surgery. She has had the trach in now for a couple weeks and is doing wonderful!!! She is still in the hospital waiting for in home nursing to be set up. We can't wait to have her home with us again!!
