Where We Are

Abeni has a complex airway. We have known since about two months after she came home that she would eventually need airway reconstruction surgery. In August our otolaryngologist (ENT) here in Utah examined Abeni for her follow up. At that appointment he seemed fairly confident that while we can't try balloon dilation anymore, she was doing ok and we could wait a little longer on the surgery. He ordered a chest CT, just to be sure, and he asked our permission to share about Abeni at a conference. We waited to hear from him but then the weather changed, some smoke from wildfires blew into Utah, and Abeni got sick. She sounded awful! I called his office and asked that they send him a message. He called me later that night, he had been waiting to gather just a bit more info before calling me, but wanted me to know that we would be moving forward with surgery after all. No one in Utah has the experience or the knowledge to safely do this complex correction. He told us he was sharing the info with Cincinnati Children's Hospital and that they were the top hospital for this type of procedure. He needed a week to get everything moving forward and told us he would call when things were ready. He called about a week later. He told us he had talked to Cincinnati and they were ready to move forward. We would be hearing from them. Not two hours later they called and started inputting Abeni's information into the computer. Abeni still sounds really loud when she breaths and has been diagnosed with asthma in addition to everything else that is going on. We really feel that this is the best course of action for Abeni and are moving forward with the construction.