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.

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!

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.

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.

Happy Halloween!

I hope everyone had a great Halloween! We sure did!! The kids had so much fun, Alexis was a Fifties Girl, Kayden was a Vampire, Tavion was Superman, & my niece Lyndsee was a werewolf. We stayed out for about two and a half hours so they all got a ton of candy. Kayden hasn't felt good lately, he's been coughing terribly and weezing so I had him bundled up on top of his costume. He got tired before the other kids so he went to the car with my sister and brother in law. It makes me so sad sometimes when I see him try to keep up with Alexis & the other kids but he gets worn out so easily, plus he stays sick anymore. I just hope next year we'll have the sickness behind us and if the doctors plan on during surgery it'll be done and he'll be fairly well recovered by then. So here we are almost November, it seems like this year has went by so fast, so much has happened good and bad. I just hope they last couple of months go smoother than I think they will, I hope the holidays are good mostly for Kayden if he's sick or if he has surgery before them, he deserves the best. He's been through so much it makes my heart break. All we can do is pray that God will keep us all safe & help my son get better.

Kayden's Story

Kayden was born on December 21, 2007 at 1:24 a.m. He was born with a bilateral cleft lip and palate, Dilated Cardiomyopathy, and what was thought to be Ebstein's Anomaly. He stayed in the NICU for 2 weeks after birth, he was on oxygen for the first couple days of his life. At a month old, Kayden wouldn't keep his formula down of course I worried, so we ended up at the ER that night to figure out what was wrong. The doctors had no idea, finally they admitted him into the hospital and early the next morning they did an ultrasound on his tummy. He had pyloric stenosis, which if you don't what it is it's a hole that helps your food digest and go through to your stomach, his was too small so they had to do surgery to make the hole bigger. He did well through the surgery, of course I worried the whole time he was in the OR. Anyways Kayden had a lip adhesion done in April 2008 at 4 months old, this was the first step to repair his cleft lip/palate. In October 2008, at 10 months old he had surgery to complete the lip repair. He did great I was so proud of him, it was emotional because he looked so much different but he was still my beautiful little baby boy. In January 2009, Kayden had the final surgery in repairing the cleft, this one was on his palate, he did great although it took a little bit longer than expected. It was very sad to see after the surgery because his lips were so swollen and he had a stitch in his tongue to hold it down and not touch his palate. Kayden went all through 2009 without any problems, his heart had gotten alot better, not all the way but where we didn't have to worry so much. In about August or September I noticed he had a bump beside his ear that was red and it felt like a cyst or something, I wasn't sure so I took him to his pediatrician to find out what it was. He did notice that Kayden had a preauricular pit on his ear and the bump was close to it, so he said he thought the cyst was coming from the pit but wanted an ultrasound done to be sure that's what it was. Sure enough the cyst was coming from the pit so therefore they said it was a preauricular cyst. He was put on antibiotics to try to get it to go away or the infection in it to go away. It just got worse, so we started going to an ENT to try and get it to go away, they also said once the infection stopped flaring up surgery would be needed to remove the cyst. After months and months of fighting this thing, he had surgery in June 2010 to remove the cyst, he had ear infections all month in June(these were the first time since birth he had ear infections) and a cold that was on and off all month. His ENT doctor knew this but still felt it was necessary to go on with the surgery. After that things went pretty much downhill, he slowly lost his appetite, started sleeping more than he usually did which is alot because he's always loved to sleep, then I noticed his legs and feet started swelling, every morning he started waking up and his lips, hands and feet would have a blueish color to them. I took him to his pediatrician to find out what was going on with him, he had no life to him he laid around, slept, didn't eat & was swelling. The pediatrician noticed his liver was very swollen which worried him he felt that blood could be backing up in his liver and his heart wasn't pumping the blood like it should have been, Kayden had an appointment the following week with his cardiologist but his pediatrician got the appointment moved to the next day. We went in for the appointment I was not expecting what happened that day. They did an echo on him and his heart function had got so much worse, the tricuspid valve was leaking more now and it was just terrible. His cardiologist then told me on July 28, 2010 that Kayden was in Congestive Heart Failure. Those three words I did NOT want to hear, my grandpa died from CHF so I was so scared, I didn't know what to do, I didn't know if I should cry if I should scream I just didn't know. So his cardiologist told us to go get chest x-rays and go straight to the hospital up to the PICU, so that's exactly what we did. We were transported to the University of Virginia Children's Hospital the following day, which we were there for a little over a week. Kayden's since been going to his cardiologist every 2 weeks to increase one of the new medications they put him on. His lungs are clear but he still hasn't acted like himself since June. He still mostly lays around and doesn't eat much. He has no swelling since he is on Lasix now that's keeping the fluid from building up anywhere. I took him to the cardiologist on October 25 because I was so worried he slept the day before all day he was awake for about 3 hours the whole entire day, didn't eat & laid on the couch when he was awake. So the cardiologist noticed the Tricuspid valve leaking very badly and was concerned & thinks we should think about replacing the valve. So here we are and on November 9 Kayden goes for some diagnostic tests which they will put a catheter in his heart to see if the left side is affecting the right side, measure the pressure in his lungs, as well as any other information they need. If his left side is affecting the right then he will be too high risk to do anything with the valve, so I'm not sure at this point what the option would be, but if it is not affecting it then they will be most likely replacing his tricuspid valve. This is what I have feared since I found out about Kayden's heart which was at about 4 months pregnant. I still don't know what to think or expect. I'm worried & I'm scared. So this is the way I know of to get my feelings and thoughts out and to keep people updated on him. Also I want people to be MORE aware of Congenital Heart Defects, they affect so many kids each year. And when you think it's only 1 heart that's broken it's actually breaking many more, including moms, dads, brothers, sister, grandparents, aunts, uncles, etc.


UPDATE on Kayden's story ( May 2011)..Kayden had his first open heart surgery on March 17, 2011. They did the glenn & a cone repair which is repairing the tricuspid valve. His valve is now moderately leaking so he will probably have another surgery. The cardiologists have now classified his case as a dysplastic tricuspid valve with tricuspid regurgitation instead of Ebstein's. He is doing well with the exception of having a pleural effusion about 3 1/2 weeks out of surgery. And here we are going on 2 months after surgery & the effusion is coming back. Hopefully this will get under control soon. He still isn't very active like he use to be before his heart got worse, but I'm getting better with accepting that he will probably never be that child again. I just have to cherish the memories of Kayden while he was well.


Update on Kayden: 
On June 14, Kayden went to UVA his heart kept getting worse after the effusion. So UVA did an echo and his heart was actually worse than before the surgery in Boston, they said the only reason things weren't worse than what they were is because of the Glenn he had done in Boston. So the plan was to do a transplant evaluation and get him listed asap. They did everything to list him, the cath knocked him down though. It threw him under the bus pretty much. His heart rate dropped in the cath lab, they got him stable and back upstairs where they were having blood pressure issues I believe it was. Well he stayed intubated for about a week and he came off the vent. While they were getting him off that, he was saying 'no more no more no more', those were the last actual words we heard Kayden say. He took a 2 hour nap and woke up completely out of it. He was having uncontrollable movements, he wasn't talking and he kept looking around the room. I had never seen him do this so I was worried, they did a ct scan and nothing showed up. According to them it was medications and to this day I will swear up and down to any damn doctor it was not no effin medications. He finally got the movements under control. But he wouldn't talk, I would whisper things to him and if he'd come out of it for a second he would shake his head and one time he mouthed 'love you' to me. Kayden passed away July 14, 2011 he was on the transplant list for 2 weeks. I feel like they waited too long to help my baby. I am a firm believer in everything happens for a reason but I can't figure this one out. I also know Kayden is in a better place he is no longer hurting but damn it I just want him back I miss him and want to hold him. He was and will always be my little miracle <3