Kayli's cardiologist called back today with the result of her lung perfusion test, taken the end of last week.
In general, our lungs receive blood from the Pulmonary Arteries. The blood is typically distributed unevenly, with the left lung getting apprx. 40% and the right lung getting 60% of the blood because the right pulmonary artery is larger. In Kayli's case, the opposite is now true. She is getting 40% of blood flowing to the right lung, and 60% to the left. The Cardiologist said the right lung is currently working with apprx. 1/2 the blood flow it should be. The good news, is that it is not an URGENT issue, meaning she can get her flu shot and go back to school...and...she can have her EGD and heel snip surgeries on the Monday after Thanksgiving Day.
The next step: Kayli's cardiologist is presenting Kayli's case to the Medical Board at Children's Memorial Hospital. The board will discuss the options of a Heart Cath, vs. Open heart surgery. One of the only 2 doctors who has experience and skills to do a Heart Catheterization, is the very same dr who told us his hospital would never give heart surgery to a child with Trisomy 18. Since then, Kayli DID have her open heart surgery there (against his wishes, and without his involvement). I was scared for Kayli at first, but then realized, God may be forcing his hand to use his God given skills to work on (and open the door for) children who have Trisomy 18!! What a joyous day it will be when Kayli opens the heart of the discriminating dr!!
Family update: I will be having EGD and Colonoscomy surgeries tomorrow. I will likely be diagnosed with the same incurable diagnosis as my 12 year old son, Jacob. He has EOE. And then I will be checked for any additional pre-cancerous polyps in my colon. As I mentioned, Kayli will have surgery on the Monday after Thanksgiving, which will be around the same time we will hear the optimal route to fix her Pulmonary Stenosis/Hypertension. The following Wednesday (of the same week), Niko (Kayli's 6 year old brother) will be put under anesthesia for his brain MRI to check for growth of his inoperable brain tumor. I will keep you informed of the surgical date for Kayli's heart surgery.
Please say continued prayers for our family, and Please allow us to return the favor by posting YOUR family's prayer request here as well!
Thank you and God Bless!!