Anthoney could not breathe at birth and was immediately intubated and transferred to a critical care NICU. After spending 2 weeks there and multiple levels of testing it was decided he needed an even higher level of care and experts and we were transferred to Lucille Packard Childrens Hospital in Palo Alto, CA where our real journey began.
We were told after yet another look in his airway that his tracheomalacia was so severe that our only choice was to give him a tracheostomy(artificial airway) to be able to breathe. Along with 6 areas of brain damage that the Dr's assumed happened during the pregnancy from Anthoney having a stroke in-utero, he could not swallow well either and also had a surgery to place a G-tube so that he could be fed safely directly thru his tummy. Our beautiful baby boy was finally able to come home after much training and the set-up of having nursing care in our home to help us safely care for him at home.
Through much TLC and therapy with many different therapists (feeding,speech, OT and PT), countless Dr's appts. with specialists here in the bay area at Lucille Packard and UCSF and finally a trip to Children's Hospital Cincinnati to meet with world renown doctors to find a way for his airway to be strengthened. A total reconstruction of his upper airway(taking pieces of his rib cage cartilage to widen and stregthen his airway) was our only answer but the timing had to be right,done too young and it doesnt have a high chance of sucess so we had to be patient. But his airway was still so critical even with the trach in place so at 18 months we did a major surgery, a tracheopexy and aortapexy, we had his lower airway pexed open(they basically suspended his trachea open in the front and back with sutures so it wouldn't collapse all the time and cut off his airway) and they had to move his aorta over to make more room for his trachea, but the surgery came with complications, it paralyzed his vocal cords and caused subglottic stenosis (narrowing below the vocal cords). Another two areas that needed to eventually be surgically addressed in order to be able to be trach free.
Now age 4, Anthoney is thriving in all other areas of his life. He is talking, eating orally and in preschool 3 days a week with his nurse along side him. We have finally gotten close to that next and most important phase. Anthoney is scheduled to have his surgery this summer at Lucille Packard Children's Hospital. It is a 5 hour surgery and we have been told he will be in the hospital for at least 3 weeks. My wife and I will be taking time off from our work to be by his side for the entire recovery. As well as taking care of our 6 year old daughter. Due to my wife suffering a ruptured brain anuerysm last year her paid time off at work is depleted. The money raised will go directly to his out of pocket medical costs as well as his recovery.
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