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

Monday, May 23, 2011

I love them so much it hurts =[

Yesterday Kayden went to the cardiologist for a check up!! He has been kind of on and off with feeling good lately, and I've had issues with his oxygen the past few days/nights! To be honest with myself, I haven't saw much of a difference since his surgery, I mean he has in some ways gotten somewhat better but in some ways he is worse. Like the oxygen situation before his surgery he had normal sats, now he is like 80s to low 90s. Well we aren't the only ones noticing. His cardiologist today said the same thing that I was going to talk to him about. He has seen Kayden hasn't made much progress..His leakage hasn't improved much at all & he agrees that he has more needs now than before, & his oxygen should be normal now since there is nothing blocking the glenn shunt.

So once again I heard those words about the transplant, so we did an echo today mostly to see if there was any pleural fluid. There wasn't any that could be seen on the echo, but his tricuspid valve doesn't come together now, so pretty much he didn't take to the surgery. I mean he did for a little bit but now he isn't. I don't know WHY it happened & I don't think any of the doctors know. But yet we all knew it was possible. So afterwards we were talking & I asked his cardiologist, if he thought Kayden needs a transplant & his words were there is not a doubt in his mind now that he doesn't need one. So he will be sending his echos & xrays & all that to UVA & also Boston. We are going to UVA on June 14 for his ear situation & he is gunna try to get him in with the cardiologists that day as well. Most likely now they will be evaluating him for a transplant. & he also told me today that he has never seen a more sicker out patient than Kayden in his life..heart wise that is....So those were real encouraging words. I know Kayden's heart is huge & bad it takes up almost the whole left side of his chest..His x-rays are scary to see how big of a heart he has & his heart function still SUCKS! It's just all so much to take in....

You know I hate those words, he needs a transplant. I really still haven't had a chance to let it settle in. But I've also accepted this, I will NOT try to prepare myself for this. I tried to with his surgery in March & that plan went all to hell, as soon as I walked out of the room leaving him in there to go back for surgery I broke down. I can NOT prepare myself mentally or emotionally for any of this. I LOVE KAYDEN & I would love to take his place, I've lived my life, he deserves to live his as well!! I have to stay positive and know that God is looking over him. He has gotten him this far, so why would he take him now? Kayden has proved his self a fighter & he isn't giving up I REFUSE TO LET HIM!! I do believe in everything happens for a reason, so no matter what happens I have to realize that, whether I accept it or not. HOPEFULLY it's in God's plan for Kayden to live a very long happy life. But it's already written, whatevers gunna happen is gunna happen I can not change that!! I do hate the fact of feeling helpless, I can't do anything..It's out of my hands and i HATE the way I feel right now!! 

I hate the knowing I will be away from my kids for awhile. I hate the hurt it makes me feel..It's like someone is stabbing me and just keeps turning the knife!! It hurts so bad, I love my kids & I'd do ANYTHING for them & being away from them is harder than you could imagine!! I know it is for the best because Isaiah & Tavion need their big brother & Alexis & Kayden love each other I think more than any of my kids haha, they are so close! So Kayden has to be okay, not only for me but for Alexis, Tavi & Isaiah!! 

I guess that is where my subject comes in, I LOVE THEM SO MUCH IT HURTS!!! I hate thinking about being away from them again, I know I will at least be close enough to come home and see them since UVA is only 2 hours away from home, but still I can't be there EVERY DAY!! WHAT IS IT LIKE TO BE NORMAL AND BE WITH YOUR KIDS DAILY AND NOT WORRY ABOUT THEM? I forget what that life was like. I remember a little of how it was before Kayden got sick, but it HURTS me to to think of those days, and sometimes I honestly think I block those days out because I want to cry everytime I think of them!!! Today his cardiologist said he would give anything just to see Kayden walk down the hall, and I was like yea I know, he use to & his cardiologist was like yea, and I was like I don't know what happened after his ear surgery..After that is when everything went downhill..And he said he just doesn't know but something just went wrong! And he is absolutely right!! Something went wrong & I DON'T KNOW WHAT IT WAS!! I want to get his medical records so bad but I'm kind of worried at what I will find. So eventually I'll get them!! Next month will be 1 year since his ear surgery & 1 year since I lost my active little toddler who ran around outside & loooved it!! 

1 comment:

  1. Awwww This Made Me Cry Right Along With You..Kayden Is A Trooper..& I Know What You Mean About Being Away From Your Other Kids!It's Not Easy In ANY Way..I Love You 5..I PRay For You Guys Always & I Always Will..I Hope They Can Fix Kayden So He Can Be The Active Toddler You Just Had Last Year :(..Keep Your Chin Up & Stay Strong..I'm Sure It's Hard BUT We Are All Here For You Misty ! I'm Always A TExt Away <3 You Girlie !