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

Wednesday, June 15, 2011

& the walls come crashing down

Kayden went to UVA yesterday & I'm cutting straight to the point. His echo results were TERRIBLE! His heart is worse than it was before surgery. Do you get how discouraging this is? It makes me feel like all those weeks in Boston were wasted! But really they were not. i know Boston did the best they could to try to fix his little big heart. I know that it helped for a little bit & I knew going into surgery it was so very possible he may not take to the surgery & may still need a transplant. Well here we go almost 3 months post op & he is in the PICU at UVA...he needs a transplant. First they have to get his other organs working before he gets one & his liver isn't too happy which we knew & his thyroid isn't either. The thyroid problem is probably coming from his medicine Amiodarone that was started after his surgery in March he is suppose to be on it for 6 months post op. So they have stopped that for now & are going to supplement his thyroid. They will also be getting antibodies from his thyroid to see if really it's his body attacking it..lets pray it's not!!!! They seem to be pushing to get him on the list so hopefully it won't be too long!!! My heart is broken. I love that kid more than life & my walls have came crashing down around me. I really wish things hadn't went this way, but I guess they didn't really see how bad his little heart was. I really don't know what to say anymore except for PRAY for him & when you don't think you can PRAY SOME MORE!! He needs it!! He needs as many prayers as he can get right now. Pray he gets on the list asap & pray for him to get his special heart ASAP & pray for the family who gives him the special heart as they will be going through a hard time as well!!

On a second note, I told Alexis today about what's going on. She understands to a point of what is going on. So I told her Kayden's heart is sick again & they have to find him a special heart. She asked me why his heart was sick again & I told her because it was sicker than his doctor's up north thought. So I had to explain they'll put a new heart in Kayden & it will make him better again. I'm going to try my best to get her up to UVA & see him at least once a week. He does good with her around & she misses him. Out of all 4 kids I do believe Alexis & Kayden will be the closest. She looks out for him & even being sick when Lynds or someone was mean to her, Kayden would knock them over or yell at them lol!! He's a great little & great BIG brother!! Isaiah loves him so much & I'm sure he's wondering what's going on not hearing my voice everyday. I miss my other kids so much. I'll be so happy to be together again. Please pray for Kayden & my other kids as they are going through a hard time as well without their brother or mommy <3


  1. WE are praying for you sweet little man and spreading the story In the power of Prayer you will be blessed

  2. Misty-I am a mom of a 27 week preemie named Dallas. The NICU was our home for over 2 months. Hernia repair surgeries, vision/hearing loss, contracting viruses and constant infections was the name of the game for us daily. Dallas is now 5, with cerebral palsy and PDD/NOS(Autism). Multiple surgeries, medicines, too many doctors too name later...we are still here and kicking. I love Facebook. It is sooo good to know that its easier for people now to keep in touch with others struggling with their kids' health. Good luck!

  3. Awwww He's A Trooper Misty...You're Beyond Blessed & I Pray For You Guys All Day & Every Day ! God Has Plans We Don't Know About..& No 1 Will Ever UnderStand Why He Did What He Did :(..It Breaks My Heart That Your Other 3 Gorgeous Little Ones Have To Be WithOut Mommy :(Have A Good Visit With Your Little Ones & Remember I'm Always Here For You..<3 You 5 ForEver & Always..Kiss All Those Babies 4 Me