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7/24/2017 Latest post:
Welcome family and friends to the site. We've created this to keep you guys updated on Kinley's progress. We are currently at Seattle Children's Hospital getting some of the best doctors, nurses and specialists working on our precious baby girl. We appreciate your support and prayers during this time of need.
Here is a little background of how we got to this point. Friday evening, 7/21, Kinley began having trouble breathing and cold sweats. We took her to Good Samaritan hospital where they immediately began running tests to try and determine what was wrong. After an ultrasound of her lungs and heart, they found the right side of her heart to be enlarged and under a great amount of stress. This stress was effecting the efficiency of her lungs, causing her breathing issues. Once the team at Good Samaritan got her stabilized we were transferred to Mary Bridge Children's Hospital for more specialized care in pediatrics.
Once we arrived at Mary Bridge the medical team ordered an additional ultrasound of Kinley's brain to see if something neurologically was causing this. Unfortunately the results came back and Kinley was diagnosed with having Vein of Galen Malformation (VOGM).
What is VOGM?? It's a disorder which affects the blood vessels in the brain causing them to become dilated forming an aneurysm. VOGM is a rare vascular malformation that develops before birth.
How does this brain issue effect her heart and lungs?? With the aneurysm being so big it wants to "steal" a lot of blood from the rest of her body. This increase of desired blood flow causes the heart to work harder than normal. Once her heart began working strenuously to keep up with such demand it has become enlarged. In addition, the lungs are now deprived of oxygen due to the decreased volume of blood being pumped to them.
We were transferred to Seattle Children's Saturday night, 7/22, to work with doctors who specialize and have seen this issue. We are currently in the process of figuring out when the best time for treatment is. Treatment would be Endovascular Coiling which is an invasive surgical procedure where tiny coils are placed in the effected vein to promote clotting. The goal for this procedure is to reduce the amount of blood flow to the aneurysm allowing her heart to regulate blood flow to the rest of her body.
We currently have a long journey ahead of us. Throughout her treatment we want all our family to be included in her progress to continue having Kinley in your thoughts and prayers. This site will help us update everyone at the same time and allow our family to focus directly on Kinley as for she needs us the most during this time. The best way to show your support is to share your thoughts and comments here. Kinley is blessed to have such an amazing love surrounding her!!