Thursday, November 1, 2012

Kayli's Heart/Chest CT scan results are in....

Last Friday, after Kayli's annual heart check up, the Cardiologist saw what appeared to be a glimpse of Pulmonary Stenosis, or a narrowing of the Pulmonary Artery.  The pulmonary artery is a major artery that comes from the heart and branches out to each lung, supplying the lungs with blood. We have anxiously been waiting for the results.

Today, I got "the call" from Kayli's cardiologist.  Kayli does have Pulmonary Stenosis/Pulmonary Hypertension now.  Kayli's pulmonary artery that leads to her right lung is significantly narrowed or "tight".  There are many ways to have or develop Pulmonary Stenosis.  The Cardiologist thinks that in Kayli's case, her arteries are growing, but a "special" little section is not developing along with the rest of her arteries.  The objective now, is to figure out the cause of the stenosis, test for the severity of the stenosis, then put together a plan for treating the stenosis.  Our first step in place, is to get a lung scan/profussion test, to measure the blood flow into her lungs to see if they are equal or not.  The test will also measure the amount of pressure in her heart, and how much air her lungs are getting, which will tell us how much the stenosis/hypertension is affecting her heart function and lung function.  Her testing is scheduled for Tues. If the testing is not favorable, she will need a heart catheterization, as the next step.  If the Catheterization (diagnostic, balloon, stent) is not favorable, we will be discussing another open heart surgery.

The hardest part about the situation, is that there are very few Specialists who are skilled to do a Pediatric Heart Catheterization in the Chicagoland area, and one of the few skilled dr's, is the very one that outright lied about a hospital's denial for Kayli's heart surgery, and (aggressively, verbally) refused to EVER work with Kayli, simply because she has Trisomy 18.  On one hand, I am irritated that God would force me to face such a close minded specialist, given such an amazing gift from God, even when the specialist (in my eyes) does not deserve the gift.  And on the other hand, I see God tapping me on the shoulder and saying "All my children are worthy of My love, and he is no more, nor less, deserving of the enlightening experiences your family has received with Kayli.  You must love thy neighbor unconditionally, as I do".   I need to trust that God's Will prevails, and there is a reason for EVERYTHING!!! <3  A familiar quote comes to mind.... "God only gives you what you can handle, but I think he trusts me too much!" lol

Please keep Kayli in your thoughts and prayers, as we remain steadfast in our faith in the Lord.  
Thank you,
Kelly, aka, Kayli's Mommy <3


  1. My heart goes out to you and your angel. I pray for her health and answers and especially for the Dr to remember his oath to do no harm.

  2. Praying for you guys. The only doc we've ever had that I didn't feel was totally on board with my plan was a surgeon who had a reputation for being a magician in the OR. I still don't think he feels we're following the best course, but if it'd been someone else doing the surgery, I don't think Aaron would have made it. It's so hard to work with docs who can't see how special our little ones are. Praying his eyes will be opened with Kayli.

  3. Hello, Kelly my heart goes out to your family.I will keep you guys in my prayers,Amen!!! I Love you all!! May God bless you guys to the utmost!

    ~Hugs and Love T.J.

  4. You have a very beautiful Daughter.. God bless your family