I have handed my son over to surgeons knowing they would stop his heart, and prayed that it would beat again. I have learned more than I ever thought I could. I have cried more than I ever thought possible. I have celebrated victories and milestones that others never have to. I have walked a road I never knew existed. I will walk this road forever. I am a mommy to a CHD Angel ♥ iLy Kayden James

Thursday, January 13, 2011

Kayden..You're my Hero

So my little man had his check up today with his cardiologist. He did another echo and everything is still the same, no worse & no better. So I guess that's good right? I also told his doctor about the cardiologist calling me from Boston. He was very surprised they called me. He said the way that usually works is after UVA sent the information to Boston, then Boston sends a letter to UVA with their recommendations and then if he wants to speak with me he asks UVA if it's okay to call me. Well I don't know if UVA said it was okay since I haven't talked to them in a month. Anyways, his doctor definitely thinks it would be a good idea to go see them up in Boston. He was telling me how Dr. Del Nido is 'the man' with surgery & he's the top person up there in their cardiology department. So THAT is great to hear he's one of the best. And I want the best for Kayden!! Also, his doctor talked to us after the echo, he told me Kayden may not look like it, but he is a very sick little boy & his heart function is very poor. Which I already knew how bad it is. He also told me, which he knows I already knew but he wants me to KNOW that there is a chance of death with heart function as bad as Kaydens. He also said once again how Kayden's case is very rare & I need to still watch him and if he looks like he's going to pass out or if he does then I need to get him to the doctor right then. He said with kids that have heart function as bad as Kayden it's hard to resuscitate them. So he wants me to play it by ear with him & his office & he was going to e-mail the doctors at UVA & Boston because he said things need to get going now. So soon enough my baby boy will be having surgery to fix his broken heart =/

Now on with what the doctor from Boston told me. He said from talking with Dr. Del Nido & one of the other surgeons there, they think Kayden should have a Glenn Procedure done & I think he also said a 'Cone' Repair <--which I think that is to fix the valve that's leaking. So once I told his cardiologist that today, he was happy that they think there is another option that will help that isn't a transplant & he definitely wants to do it if they think it's possible. But since UVA didn't send the cath information over yet, I don't know what they'll think after getting that information. So it looks like we are going to be going to Boston for them to do an evaluation on him, & I'm considering doing his surgery there whenever or whatever it may be.

-So now, I've been wanting to cry all day just because I do know that it's possible Kayden won't survive the surgery or waiting for the surgery. I'm so worried, & I don't know if I'm that strong to live without my son. I pray everyday that God let's him make it out of this okay. Again I believe everything happens for a reason, and I believe God made Kayden like he is for some reason, & rather it be to straighten up people's lives, because he's touched many peoples lives and this Angel makes an impression on all of them. Or rather it be for all of these doctors from Roanoke to Boston to learn from Kayden to help another child who has a heart like his. It could be 10 years from now or it could be 30 years. Kayden's condition & what these doctors are learning could save another childs life. I just hope I get to keep my son in the long run. God's got his hand on Kayden & he's got a lot of Angels watching over him & he's got a good line of doctors & a very strong support system with our family. Kayden is my hero though, he's strong & he's been fighting this for 3 years and for the past 6 months it's been the biggest fight & I don't see this little boy giving up easily. He hasn't yet and I don't see it happening anytime soon! I LOVE YOU KAYDEN JAMES!!!!!

Kayden's Lullaby


  1. Misty you are an inspiration for all mothers out there, your strong and courageous. Little Kayden is a fighter, and i continue to pray for him everyday. Hes a fighter and a surviver.

  2. Hi! Stopping by from MBC. Love your blog.
    Have a nice day!

  3. The news is hard to hear and I am glad you are considering all your options. Boston is a wonderful hospital and I know Del Nido does great work. I pray you get there soon and he gets his repair done as soon as possible. I will be keeping you all in my thoughts and prayers.