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, November 29, 2010

How do you try to accept something that seems so unreal?

It's been a couple of weeks since I've updated at all..So much has happened between then and now. Kayden had his catheter done on November 23, what was suppose to be a 1 night stay in the hospital ended up being a week stay at the hospital. I really wasn't expecting what the doctor had to say about the cath. He said Kayden's heart is barely pumping enough blood to his body for him to survive & anything could tip him over the edge, it's too high risk that he wouldn't survive through surgery to repair the valve because it's so damaged and his heart is so weak. So the other option we had was a transplant which no one wants to do right now if it's avoidable. Once the doctor walked out of the room from telling Philip, me & my mom about what they found, it was total silence. I mean what do you say at a time like that, me and Philip were basically told our son is barely surviving and just about anything could cause him not to be with us anymore..And for my mom, no no one is suppose to have favorites but Kayden is her favorite grandchild or I guess it's just we all love Kayden differently than the other kids..So for all 3 of us that was one thing we did NOT want to hear! Once we got to see him in the PICU that afternoon he was sleeping, he had to lay on his back and keep his leg straight for 4 hours, which was hell once he woke up. I couldn't hold him because they left the line in after the cath that was leading straight to his heart. Soo the next day the cardiologists had their meeting and came to the decision they were going to contact some other cards in the country to get opinions about Kayden's case because there had only been a handful of people in the country who's had a heart like Kayden so it's a difficult decision as to what to do to fix it..They put him on a new medicine that's been helping, and as long as it continues to help we can put off any surgery. The doctors wants his body to get stronger for any future surgeries. So there we come to the title of this post..How do you try to accept something that seems so unreal? HOW do I accept that my son may not be here a year from now, how do I accept that my son may not see another Thanksgiving or this may be his last birthday or his last Christmas..How do I accept these things? They are so unreal..How do you take in that your child is barely surviving? I don't think a parent is prepared to hear that..or for other CHD parents whose children don't make it..Are any of us really ready to hear our child didn't survive? All this is so unbelievable for me..I always said when he was born I knew he'd have a cleft lip/palate but there was no way to mentally or emotionally prepare myself for that, I didn't know what to expect..But once he was here I looked past it and I saw a beautiful baby boy..And now with this there is no way to prepare myself for what the future holds...Kayden has showed me so much strength through all of this..I read somewhere that people can put a face to childhood cancers and aids and such but CHD kids when you look at them they usually see them at their best, they are playful kids just like a normal child..They don't see these kids at their worse, so they can't put a face to CHD's..My son is the face of a CHD and it is upsetting that some people don't take a heart defect as serious as a cancer or something..I think I've already posted this in an earlier blog, but let me ask you, how many childhood cancers require you to stop your heart in order for it to get better? And some of these kids require multiple open heart surgeries, some of them will not survive and some of them may, but they may still have multiple complications...CHD awareness needs to be spread everywhere because unless you've walked in the shoes of a CHD parent you don't realize the seriousness of these problems. I still don't know what to expect with Kayden, the new medicine may help a month, 2 months, or a year I don't know..But what I do know is i shouldn't have to live my life worried about what will happen to my son, and I shouldn't have to make him stay home because it's too cold for him to go enjoy something when the other kids get to go..I shouldn't have to, but when he is so fragile which he is, that's what I have to do..Or I will bundle him up like its -50 degrees outside just to go to the store and people look at me like I'm crazy...But that's what I have to do to keep him well, because the smallest thing could put him in the hospital and become a big problem for him. Kind of like the ear infection he had a few weeks ago, he ended up in the hospital..It's just so unreal anymore. My son is a fighter and I will do what I can to keep him here with me, because I can NOT accept that he may not be here in a year..It will always be in the back of my head but I will not accept it anymore I can't, I don't even know how to accept it.

Sunday, November 14, 2010

Over the past week...

Kayden didn't get his heart cath done on Tuesday November 9. He was fine Monday, he woke up on Tuesday with his ear draining, weezing, coughing(still), and he spit up a bunch of mucus from the coughing. We took him to the hospital like we were suppose to. The doctors all took a look at him and wanted the anesthesiologist to check him out. So once he did, he felt it wasn't safe to go ahead with the procedure because with his chest not being clear enough it would just get worse afterwards. So he suggested to take him to his pediatrician when we got home. I did just that, by the time we got to the pediatrician his temp was 103, so his doctor felt it'd be best to put him in the hospital with all the risk factors involved. We finally came home yesterday November 13. He's doing better, except they put an N G tube in and he's got it for a little bit until he gets his appetite back I guess. We aren't sure how long he'll have it for..His cardiologist also increased his Lasix dose from 1.5 ml's twice a day to 2.5 ml's twice a day to help with the fluid overload. It's helped so far, his face isn't nearly as swollen as it would be some mornings, and his legs were getting a little puffy and they've went down. So the plan is now for the heart cath to be done on November 23, right before Thanksgiving, but he has to see his cardiologist on November 22 to be sure his chest is clear and he's okay for the procedure..After this we should know what they want to do about him heart. Please continue to keep Kayden in your prayers!

Saturday, November 6, 2010

Only a few more days

So as Tuesday gets closer it scares me to death...Kayden will get the heart cath done of Tuesday and all these tests they are going to do will tell whether he needs his tricuspid valve replaced/repaired or if he will need a transplant. I'm scared and nervous. I just want to kick, scream and cry all at once..I've never been so afraid to face anything in my life until now..I know that this is the best thing for him because he isn't getting better...He's obviously gotten worse, his abdomen stays swollen from his liver being big, he hardly eats some days, he lays around and hardly EVER gets up to play with anything. He never runs around with Alexis, Lyndsee or Tavion anymore like he use to...It breaks my heart seeing him like this, especially when I remember so clearly him running around outside and inside..I remember his second Christmas when my brother got the girls a kitchen and he loved it too, he stood and played with it almost as much as they did.Even earlier this year he loved jumping on the trampoline and playing outside, then once he had surgery in June everything changed...Sometimes I feel guilty like I should have told the ENT doctor not to do the surgery because I knew he still had ear infections and he still wasn't feeling up to his self..I know I shouldn't blame myself but how can I not since all this happened after that surgery...I just hope things get better soon..Kayden is my heart and I'd be lost without him.

Tuesday, November 2, 2010

I don't think ANYONE understands...

UGHH..so today hasn't been one of the best..I feel so alone sometimes like I'm the only one who actually understands anything that's going on. I think some people only want to be there just because I don't think it has anything to do with supporting me or being there for Kayden, or being there for ANY of my kids. I'm frustrated and have no one to go to. I want to scream and pull my hair out or just throw a few things and have a nice cry, but if I do people still are like what's your problem..I honestly can say people just don't understand how I'm feeling right now unless you've been in my shoes & experienced something like this. I don't know what to expect with my son, I don't have any idea, I don't know if I'll have him in a year from now..I don't know if he'll be with me 5 years from now..I DON'T KNOW and I shouldn't have to think like that, but I do and it's reality. Anything could go wrong if he has surgery..I mean they have to stop his heart for open heart surgery, and for a transplant..So really if they stop your heart, your dead...WHAT if his heart doesn't start again..I know everyone says you've got to have faith..Well let me tell you I've had faith since the day he was born and I won't lose faith in the doctors and I know God will watch over him, but it's always easier said than done...It's always easier to watch someone or see someone else go through something, yea you think about them or pray for them but when it comes to being on this side, on the side that things aren't going so well & you are in a situation where you just don't know what's going to happen it's hard to look at the good side and not the bad..I'm just glad I have a few friends who will stand behind me and support me no matter what, and I have few family members who I KNOW will be there for Kayden & me and not just because.