Tag Archives: warrior angels

Presenting our 21st warrior, Steve!

I have to keep adding that exclamation point at the end of these titles. How come? In my head and heart, every single name reflects a warrior who is either still fighting, or has fought the good fight. If I could put each name in blinking lights and in neon, I would. Each name is celebrated over here at Queen of Hearts. Each name means a story and name that deserves to be shouted at the top of our lungs.

Steve is one of those stories and names.

Back in 2007, I had a blog called “The Bent Bunch” or something of that nature. I only say that because the name changed. I started it in 2005 as homage to our firstborn, James. Then we had Natalie, the blog name changed again and I really lost track of the title changes. Still fresh from our newly diagnosed newborn girl as having half of a heart, I wrote a little about my feelings coping with it. Most importantly, updates of Natalie’s (almost) daily and weekly doctor visits, weigh-ins and pulse ox checks, so family and friends could catch up and we could minimize our phone calls and focus on keeping our daughter stable. The blog, by a huge distance, was never a big read in the blogosphere. But any followers we gained were an immense gain to me. But, we lost readers and comments when I broke out the news about Natalie’s “special heart” in May of 2007. It’s expected. People freeze up and aren’t sure what to say. So they give distance when the distance wasn’t necessary. All purely innocent and  you can’t take it personally. But moving forward, we gained some new followers of Natalie’s story when she was an infant. The very first CHD-related connection our family made was with Steve.

Steve Catoe left a comment on one of the Bent blog, reaching out to our family with support and advice. I was so preoccupied with our life handling a sick infant and active, healthy toddler that I took a little time finding out who this Steve was. How did he know what he was talking about? Who is he? How is he so awesome? I was in for a real treat. Not only did Steve share the exact same defects as our daughter, but he received open heart surgery and treatment for quite some time at Johns Hopkins Hospital in Baltimore- the hospital who cared for Natalie’s heart for almost 2 years. We walked the same halls at Hopkins that Steve walked. We felt the same feelings Steve’s parents felt. It’s incredible.

Steve Catoe began blogging in 2008 at Adventures of a Funky Heart. He made a huge imprint in the Adult Congenital Heart community, as well as the CHD community as a whole. He wore many hats- warrior, survivor, friend, advocate, supporter, blogger, and the list goes on and on and on. Every word he said or wrote was valued and still is to this day. He had a knack for taking huge medical terms and allowing all of us readers to understand every single bit. The impact is huge and it’s still felt in the community. His imprint will forever exist.

We were all incredibly blessed to have him.

On November 29th, 2010, while doing what he loved- writing at his computer, Steve suddenly passed away.

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Below are just a few of my personal favorite blog posts by Steve at Adventures of Funky Heart:

August 27th, 2010: When I’m Not the Funky Heart

“One of my Facebook friends is highly agitated… with good reason:

‘I’m SO sick of hearing “Aww so now are YOU the one with all the heart problems?” I mean HONESTLY…Do you people think that’s a nice thing to say? People don’t say that to cancer patients so why say it to us?’

Preach it!

Personally, I don’t mind talking about my heart. (Hey, I write about it every day!) But I do have a few pet peeves. There are times when I just want to be me. This is an invisible disability, after all, and occasionally I want to remain invisible. Just one of the group, nothing unusual about me. When I hang out with my friends here at home, I’m not the Funky Heart and the wordsCongenital Heart Defect rarely cross my lips.

Another major irritant is being introduced not as a person, but as a health issue. Don’t you dare. If you introduce someone as “having a heart problem”, you’ve marked them. You have defined them by their medical status, and placed them at a disadvantage. Certain segments of the population will see them as “less than”. And if the other person is a young lady that I might have an interest in… well, you just threw that opportunity out the window. I want her to get the chance to know me. There’s a lot more to me than just my heart. If things go well, I will be the one who decides when it is time to have The Big Discussion, not you.

And the younger you are, the worse it can be. It’s a delicate balance – Mom, I know that you are grateful that your child survived their heart defect and any related surgeries, but your 7-year-old really isn’t in a position to ask you to hush and just let him be a kid. This would be a very good time to sit down and have a good talk with your child, and learn what they think. Perhaps talking about their problems while he/she’s present makes them uncomfortable.

The worst thing I have ever seen is a mom who insisted that her child pull up his shirt and show off his scar. You could see that the child felt like a Show and Tell object…. and mom was oblivious to the entire thing.”

July 6th, 2010: You’ve Been Warned

“Hey Heart Defect! We need to have a talk.

Yeah, you and me – I just wanted to warn you that things are about to get ugly.

I have no idea why you chose me, and for quite a while now you’ve had your way. I’ve been pretty much at your mercy because I did know how to fight back.

I didn’t know that you could fight back. You had me convinced that I was one of just a few people who you picked on, and I just accepted it.

But I’ve learned better, and while you weren’t looking, I started paying attention.

I’ve stopped being the usual, run of the mill, Woe is me! sick guy. I’ve learned how to take care of myself. I learned how my heart is supposed to work, and what you’ve done to it. I’ve learned how it really works. I even read the medical literature. Dad-gum it, that was hard, but I’ve figured most of it out and I’ll Google what I don’t understand.

I’m no longer passive – I am an active, intelligent, involved patient. I don’t just sit quietly and fill my prescriptions; I ask questions, I learn, and I follow up on important things. I do what I have to do to keep you under control. I found a really good Cardiologist, and not only do I have him on my side, I’ve got his partner, a bunch of good nurses, and a whole freakin’ hospital backing me up.  Anytime you want to cause trouble, you’re gonna meet my crew. And we ain’t going to fight fair.

And from now on we’re going to be playing by my rules.”

June 15th, 2010: The Funky Heart’s Rules

“Fans of the TV show NCIS are familiar with “Gibbs’ Rules“, a series of life lessons condensed into short phrases by Team Leader Jethro Gibbs. The Funky Heart also has a basic set of principles.

1) Never take from the Congenital Heart Defect (CHD) community; only give. This one should be a no-brainer. Unless they are lucky enough to be well off, Heart Families have to burn through a lot of their resources in order to help their Cardiac Kid. Medical staff, ICU, drugs, equipment, hotel for mom and dad… all this costs a lot of money. And a CHDer who doesn’t take prescription drugs is a rare thing. In case you haven’t noticed, drugs can be expensive.

CHD Support Groups are also financially strapped.  Most have razor-thin budgets and are barely making it themselves – especially in this economy. If they are lucky enough to generate any revenue, the odds are that money is reinvested in the organization. So I can’t in good conscience take money from these people or organizations – they need every bit of it. When I am invited to attend a CHD conference, I personally pay for my own airfare and my hotel room. My family has been just where these families have been: stretching that dollar until it breaks.

2) It’s not about Awareness. Think about it – most of the readers of this blog are already painfully aware of Congenital Heart Defects. Rather than being about awareness, Adventures of a Funky Heart! tries to focus on CHD Education: Can my child live a productive life? My child has an oxygen saturation of 87%, is this normal? Is Hypoplastic Right Heart Syndrome a defect? I answer these questions by writing about the latest research, new Congenital Cardiac Technology, and stories from my life and the lives of other CHDers I know.

3) NEVER lie. Don’t believe me? If I’m giving you a report or other information, the statements I make are backed up by a link, like this one:The sun rises in the East. You don’t have to believe me, but you can read for yourself and see why I think the way I do. Not that long ago I was accused of using “scare tactics” after I wrote a post listing the side effects of Amiodarone. But I had links to other articles and to a blog written by an Electrophysiologist (a doctor who would normally prescribe Amiodarone) and I stand behind every word of that post.

4) Always be positive. Despite the high survival rate for some heart defectsand the declining mortality of CHDs, deaths due to a heart defect still occur. Each one is tragic, a life cut much too short. I do my best to project a positive attitude – you can do it, you’re strong, just hang on. You’re going to get through this. And while I do discuss death when necessary (Jim Wong,Eliza Huff, and Gracie)  I don’t dwell on bad outcomes. Especially in a crisis, that’s not what a mother needs to hear all the time.

5) Be there. Sometimes all you can do is spend time in a waiting room, or just sit and listen (or read an email) as someone pours their heart out to you.”

 May 16th, 2010: George“My friend George spoke at the recent Lobby Day event in Washington DC. I wish all of you had been there to hear him.Like many of us there, George has a Congenital Heart Defect (CHD). His defect is Tetralogy of Fallot (ToF) and he is a retired Pathologist from out West. That’s right – a retired Pathologist. I’m not going to insult him by listing his true age, but George worked a full career with a major heart defect.He’s quiet and unassuming, probably the result of his years in the medical field. Pathology is a very scientific branch of Medicine; attention to detail is a must and you do not jump to conclusions. So when George stood up to speak, I wasn’t expecting what came next.

Long story short: George tore the house down! He stated that he had recently celebrated a birthday and then he said;

“I firmly believe that one day those of us with heart defects will routinely live to be eighty, ninety, and even one hundred years old.”

That did it for me right there. I’m 43 years old, but I’m 42 years, 7 months past my “expected” life expectancy. And here’s a respected member of the CHD community, a retired scientist, saying that he thinks that one day we’ll live a good long time? And might even hit the century mark? And all we have to do to start down this path is obtain funding for the Congenital Heart Futures Act? Right then, I was ready to walk down to the Capitol (Three blocks away), climb the dome, and rip that statue right off the roof!

George also has a very dry wit; he can tell a joke with such a deadpan expression that you don’t even realize he’s joking. But his humor can bite, as he proved when he recalled an exchange from his younger days.

“When I attended medical school they taught me that people like you didn’t make it,’ a doctor told me. I didn’t know what to make of that so I didn’t say anything.”

People like you? Wait a minute… that includes me!

“A few moments later the doctor asked me `Have you thought about which medical school you would like to attend?’ I answered, `Not the one that you attended.’”

You tell ‘em, George!”

And may I say? Our family has had the utmost pleasure to meet George last year while volunteering for the Congenital Heart Walk with The Children Heart Foundation, last summer in Aurora. We love you George!

Here is a really wonderful clip of Steve sharing his (very moving) story a few years back at the Regional Forum of Congenital Heart Disease. Please please watch it. IT’S SO WORTH IT..

Rest in Peace, Steve. We love you forever and your Funky Heart, too.

Presenting our 15th warrior, Corbin!

Corbin’s mom, Ruth, has a very well organized blog about her pregnancy and post-pregnancy life with Corbin. I contemplated re-writing a post to include for this blog but she has written everything so perfectly that I would never dare take that away (I’m not the best writer, anyway). I am in awe of her bravery for not only writing her feelings and experiences with CHD, but for allowing me to share them here. Below are links to the stories and small excerpts from them that Ruth has posted on her beautiful blog, “The Pearl in the Oyster“.

“February 20th, 2011, I gave birth via c-section to a 6lb, 14oz little boy. Little did we know that he had serious heart defects that would require heart surgery at ten days old.
This is his story.”

Day One

“I’m wheeled down to the OR.
The staff are really friendly. I can tell they are trying to distract me by starting a conversation. I appreciate the thought, but it didn’t really help. I am VERY aware of the anesthesiologist getting the needle ready.
The first stick really stings but it works immediately. I feel a lot of pressure when the spinal goes in and feel my toes go numb in seconds.
They lay me down and start prepping my belly. Anesthesia makes me nauseous and I’m sick once.
After some big tugs and lots of pressure:
“Whaaaa!”
I, of course, start crying.
At 2:27 pm, Peanut is brought into the world. 6 pounds, 14 ounces, he is a tiny little squirt compared to my first born of 9 pounds, 4 ounces. He cries as the clean him off and wrap him up.
When I first see him, he’s really wrinkly and red. I notice he has my nose and Hubby’s eyebrows. Just like my first born….”

Days Two and Three

“Everyone tells me that heart murmurs are nothing, and not to be worried.
But I have a bad feeling about this.”

“After a couple hours, Dr, D stops by. He tells us that Peanut’s vitals are good, his blood pressure has gone down, and he and the cardiologist see nothing wrong with sending him home. He does want to see him Thursday to check his jaundice, as it is still a little high.
YAY!
So the baby is cleared, but I am not. I still have to wait on my OB to get back from Covington.”

Day Four

“”Crap” I think to myself. It’s never good when the technician won’t talk to you.
Hubby asks:
“So do you see the murmur?”
She doesn’t answer.”

Day Five

“Around 7 that evening, members from our church show up to anoint the baby with oil. I’m not sure exactly what it means (shows how often I go to church), but in a spiritual way it makes me feel better.”

Day Six

“The NICU is very quiet and dark. We walk into a room with four stations with four babies. Peanut is on the left with a doctor standing over him, running an ultrasound of his heart. She is quiet at first, consulting with her assistant.
A short while later, she motions us over and begins to explain what she is seeing.
She has a very neat Eastern European accent.”

Day Seven

“We unpack our things at “the house” then head out for dinner. I know we can eat at the house for free, but the past couple days have been so hectic we just want to get out. We get dinner at the Roadhouse. It feels good to spend time with Hubby, laughing and making fun of people like we do.
But I also feel guilt. I feel so guilty every time I laugh. Every time I smile. I tell myself “you’re not allowed to be happy! Your child is in the hospital, broken, and you are out having fun!?”
I can’t stand myself.
And in the mornings when I first wake up, I forget just for an instant, what is happening. For the tiniest nanosecond I am happy. Then it all comes back…like a slap in the face…like a knife through the heart.
I remember.
I remember why we are here. In this strange hotel. With the hospital band still around my wrist.
My son is broken.”

Days Eight and Nine

“When we get to the hospital, the nurse tells us that over night, Peanut decided he did not need his breathing tube anymore and pulled it right out!”

“At this point I start crying. But it doesn’t faze the doctor. He touches my hand, once and very lightly, then continues on explaining. I stop thinking. All I hear is: death. It’s too much. I can’t hold it in and the tears flow.”

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“This is Corbin, just hours before his first heart surgery. We got to the NICU two hours early so that we could hold him till the OR team got there. He slept so good, he was snoring. I love that memory. ♥” (from The Corbin Story Facebook page)

Surgery Day

“Before the surgery, Hubby and I came over to the NICU at 6:30 so we would be able to hold Peanut one last time. He still had a breathing tube and dozens of wires, but as long as we sat close to his bed, we could hold him. He had come off of isolation the day before so we didn’t have to wear gowns.
It was heavenly holding my baby. Once I got him situated, he was in bliss. He slept so soundly for the two hours I got to hold him; the nurses were laughing at him. He was sprawled out with one arm hanging off to the side and was snoring. They told me he hadn’t been sleeping well the past two days and he was bound to be exhausted.
No one can do it like mama.
I loved it, I could have sat there all day staring at him. He was so peaceful, breathing calmly, snoring slightly. It was perfect.”

Post-Surgery, the next few days

“I am keeping a journal so I can take notes during rounds and conversations with doctors. God knows I would never be able to remember all these medical terms on my own.
Dr. Rh, the Ped. Cardiologist, looks like Santa. He is short and round with a long beard that he likes to stroke when he is in a deep thought. Then there is Dr. M, his Intensivist (specializes in critically ill patients), Julie the Ped. Nurse Practitioner, and Dr. P, another Ped. Cardiologist.
The doctors ramble off all his numbers and stats for the night, what kind of meds he is on, and their plan for the day.
I write down quotes so I can pass them along. But only the good ones.
“ventilates great”
“stats are good for a mixer” (mixer meaning that the two holes in his heart are mixing the blood)
“better today then when he came in”
Rounds are fun! (only when the news is good of course).”

Here, Corbin’s mom explains the several severe CHDs that her son was born with: two ASDs and VSDs, Double Outlet Right Ventricle (DORV), Atrial Tachycardia, Prolonged QT, Williams Syndrome… The Diagnosis

Here is a section where Ruth includes more great explanations and more details about the several CHDs that Corbin was born with…Corbin’s Heart Defects

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“This is what Corbin’s room looked like immediately after surgery. There are two monitors keeping track of his stats, an oxygen tank, a ventilator, and 15 medicine dispensers. I wrote in my blog that it looked like the deck of a space ship. Amazing isn’t it?” (from The Corbin Story Facebook page)

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(from The Corbin Story Facebook page: “Sadly, I don’t have a picture of all 4 of us 😦 the bottom right is the only pic of I have of both the boys together and the top is the only one of my hubby and I with Corbin. I hate, hate that I don’t have more.”

The Talk

“So I knew this talk would come. I could tell by the way the doctor was looking at me that he was going to tell me there is a chance my child won’t make it. That I need to make the decision, that in the event his heart stops beating, do I want them to try and save him or let his disease take its course.
I don’t know the answer.
I don’t know what I want them to do or how I feel about it. I am still processing this and still trying to figure out my feelings.
I’m not saying this is the end of the road. I’m not saying Peanut is on his death bed. I’m just saying there is a chance that he may not make it.”

From Two, to One….

I was going to put an excerpt here, but I just couldn’t. Please click the above link…and read….

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Corbin Walker Caruthers February 20th – May 17th 2011

Once a warrior, always a warrior.

Here is Corbin’s handsome big brother:

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“He was too young to realize he had lost a brother and I am thankful for that but we do tell him about Corbin and include him in everyday talk.”

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“Wow. Just wow. My hubby surprised me with the most thoughtful and amazing gift, made by a woman he works with. I cried when I read the quote ♥” (This was an incredible Christmas present given to the family.)

Now, Corbin and his family save the lives of many other babies born in this country. His mom works tirelessly to promote Congenital Heart Defect awareness and for pulxe oximestry use in every newborn to help detect a possible underlying heart condition. She is such a strong advocate, that she and Corbin, along with her supporters who saw the reason to march forward, passed a law in Corbin’s home state of West Virginia. A law appropriately called, Corbin’s Law. Now, every newborn is screened for critical heart defects in Corbin’s home state. Corbin is saving lives one day at a time.

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The Corbin Story Fund- a non-profit fund where donations used help fund educational material, an educational class, and projects around the community. Please visit this page and support!

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The Corbin Story. Spreading CHD awareness and pulse ox screening information every day.

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He’s saving lives.

Presenting our 3rd warrior, Kayden!

About 2 years ago, I had the pleasure of connecting online with Misty, mom to sweet Kayden. If there’s one thing I’ve learned from Misty, it’s that courageous moms do exist, and she’s one of them. Here is Kayden’s incredible story, so beautifully told by his mom:

“As an expecting mother we all wonder what our baby will be, we all want our babies to be healthy and usually expect that outcome we never expect the opposite. This is our heart journey of hope. I found out my baby was going to be a boy when I was about four months pregnant. The sonographer also noticed something about his face, she said it looked like he had a cleft lip which most of the time meant a cleft palate as well, so we were referred to another clinic to confirm it. At that clinic it was confirmed my son was going to be born with a cleft lip and palate, but also they noticed something about his heart and referred us to a pediatric cardiologist for a fetal echo.

At the appointment with the cardiologist, I was told my baby’s heart was enlarged and he had a valve leaking. I was told he had dilated cardiomyopathy, and Ebstein’s Anomaly. I didn’t know what really went through my head after all of that. I know I worried a lot about what could happen, I knew he would have to be on a ventilator when he was born if his breathing was very bad, I also knew we might have to travel to Charlottesville, VA for him to be born, or I knew he might just need a little oxygen if his breathing wasn’t too bad. During the rest of my pregnancy from 4 months on, I went to the cardiologist for them to follow the babies heart. On December 20, 2007 I went in labor, I had the most handsome baby boy at 1:24 a.m. On December 21, 2007, I named him Kayden James. The nurses were in a hurry to clean him up, he was okay though, his breathing wasn’t horrible so all he needed was a little oxygen to help him breathe, so we didn’t have to travel that night, and he didn’t have to be put on a ventilator. He was taken straight to the NICU due to his health conditions. Kayden stayed in the NICU for 2 weeks, over that time his heart had improved a little, the valve wasn’t leaking quite so bad, and they helped me learn to feed him since he had a cleft palate which affected the hard and soft palate.

In January at 5 weeks old Kayden was sick, he wasn’t keeping anything down and it worried me so I took him to the emergency room. They couldn’t figure out what was going on with him so they admitted him, the next morning that did an ultrasound on his stomach and said he had pyloric stenosis. I had never heard of that in my life, but the way they explained this was the muscle your food goes through to digest your food has a little hole where the food passes through, Kayden’s was too small. They did surgery to fix that, I was so scared that my 5 week old baby with a heart condition was having surgery, I didn’t know what to expect. But thankfully he came through very well. During his first year, he had two more surgeries. One was a lip adhesion and the other was to finish the lip repair. He did great with, throughout the year his heart was getting a little better which was surprising or it stayed the same, it didn’t get worse so we were all okay with that. He had his palate repaired at 13 months, he did well with that. Kayden’s cardiology appointments at this point were more spread out. He was a great child, he would clean up after his self if you asked, he liked playing outside, he has an older sister who he loved to play with. If you were to see him you would think he was a normal child with nothing wrong.

Kayden's sweet smiling face.

Kayden’s sweet smiling face.

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Kayden and his mommy.

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Thumbs up from a cool dude.

Sometime during the spring of 2009, I noticed a lump next to his right ear. I was concerned because I had never seen anything like it. We went to his pediatrician and he said it looked like a preauricular cyst. When he was born he had a tiny pit on his ear, it wasn’t noticeable unless you looked at his ear, so the cyst formed from that pit. As months went by it would get smaller or bigger, he was being seen by an ear, nose and throat doctor for it. He was getting more ear infections which wasn’t like him at all considering he had a cleft lip/palate which would have made him for at risk for them and he never had one as a baby. In June of 2010, the ear, nose and throat doctor did surgery to remove the cyst. That morning he was fine, no fever or anything, but the cyst looked like it was getting infected again but the doctor still thought it was fine to do surgery. After the surgery, the doctor came to the waiting area and said he was fine, he got all of the cyst, but he said his ears were really infected and there was a lot of drainage in them. The rest of June, he kept getting sick, it was either a cold or ear infections or the cyst was coming back and it was more infected than before. July was the same way until the end of July I noticed his feet were swollen and his appetite had decreased. I took him to the pediatrician first because he wasn’t due to see his cardiologist until September and I couldn’t get an appointment before the following week. I honestly didn’t think it was heart related because his heart had been stable for a year by then. His pediatrician checked him really well, he noticed his liver was swollen and concerned that it was affecting his heart he got Kayden’s appointment with his cardiologist moved to the next day.

That is when everything changed. I remember that day like it just happened an hour ago. His cardiologist came in the room, sat down and I could see in his face it wasn’t good. He said Kayden was in congestive heart failure. I was scared to death because I knew he might not make it. He told us to go get x-rays across the street and go straight to our PICU, not to admissions straight to the PICU. We got there and they were expecting us. That first day still seems like a blur because I was so scared and not sure what was going on I can remember bits and pieces of it, like them asking questions about his health, etc. He was transported to the University of Virginia that night. He was put on all kinds of different medications and stayed in the hospital for a little over a week. He recovered well. He came home, played outside, with the other kids, he was fine. Obviously he was followed very closely by the cardiologists and they weren’t sure what exactly to do. In November, Kayden had his first diagnostic cath done. The options were valve repair, valve replacement, or transplant. Afterwards, the cardiologist who done the cath said he didn’t think he would survive a repair of his tricuspid valve so they were thinking maybe transplant was the way to go. So they put him on another medication and got some different opinions. That’s when a cardiologist called me from Children’s Hospital Boston. They felt like they would be able to do a repair of his tricuspid valve called a cone repair and also do a bi directional glenn if he needed it. Kayden was in and out of the hospital the next few months with either anything he got basically. His surgery in Boston was scheduled for May. In February, he was in the hospital again and his cardiologist was concerned about him making it until May so he contacted Boston and got the surgery scheduled for March 17.

My babys first and only open heart surgery was on March 17, 2011. I was so scared because I knew what UVA had told me back in November. I didn’t want Kayden to see how upset I was so once I left him in the waiting area for his surgery I broke down. I didn’t know if by the end of the day I was going to have my son or not. He was in surgery for about 6 hours I think, when his surgeon came to talk to me he said Kayden done great. He came off the bypass and his heart took right over. He admitted that they thought he was going to give them more trouble than he did but my little man proved them wrong once again. He was in the hospital for 3 weeks in Boston, he recovered well. He came off the ventilator sooner than they had expected so that was a huge step for him.

When he was discharged the plan was to go to the hotel and leave the next morning. When we got there Kayden was okay for a little bit but then he was ‘wanna go home’, so that did it we left that night and drove the 13 or 14 hours back to Virginia. We were home for a few days when his oxygen dropped to the low 80s one night and he was breathing hard and not eating again. Once again we ended up at the emergency room and admitted to the PICU. He had a pleural effusion on the left side. This was a surprise, I was told usually they show up right after surgery & his showed up 3 weeks later. He was in the hospital with another chest tube in for another week. Slowly he started going downhill again, he wouldn’t eat, wouldn’t walk much, and he was needing his oxygen more often. On June 14, 2011 we went to see his cardiologist at UVA, that was the last time he would be admitted into a hospital. His heart function was worse than before his surgery in March and the repair had stopped working. The only reason they said he wasn’t worse was because of the glenn procedure. We were at the last option, transplant. So of course we were admitted and taken to the PICU, they got a central line in him to start medications and start the transplant evaluation. They had to do another catheter because in November one of the pressures in his lungs were too high and if it were still high then he wouldn’t have been a candidate for a transplant. That cath set him way back, he didn’t recover well from it but on June 28, 2011 he was listed as a 1A on the transplant list. He was intubated for a little over a week after the cath, when he came off it he said ‘no more, no more, no more’. Those were the last actual words we heard him say. He took a nap after the nurses got him cleaned up. When he woke up he was so disoriented. He couldn’t control his movements, he wasn’t talking ,and he kept looking around. I had never seen him this way in 3 and a half years. Slowly he would come out of it. He finally controlled the movements, but he still wasn’t talking. Kayden’s last week of life he had a few small events happen that I guess you could say maybe they were signs. One day his heart rate was jumping around and got as high as 215 one time, it was in the 160s-170s and finally settled in the 140s which was still high if you ask me but for some reason they wanted it high. His kidney function had went down one day from the previous day but the kidney doctor was in the room for a minute and listened to him and all he said was give him more fluids. Then on July 13 he was breathing hard, my mom was there with him and was telling the nurses, and also he was spitting up greenish colored stuff and she kept telling them about that and they didn’t do anything. They said it was medicines, I don’t believe that because I’ve seen him take medicines and vomit right after taking them and never once was it green. They listened to him all that day and they said his lungs were clear. The last time I had talked to my mom was at 11 p.m on July 13, and she said he was fine just breathing hard still. At about 1:30 on July 14, 2011 I got the worst call in the world that at first I thought was going to be the best. I saw the area code and thought YES Kayden’s got a heart. When I answered my mom said I needed to get up there we were losing him. I could not believe it I didn’t want to believe it. I got in touch with my brother who picked me up and Kayden’s two brothers and his sister and we all headed towards Charlottesville. I got another call from my mom and she said he was gone, I dropped the phone and just cried I didn’t want to believe my baby wasn’t here. He was a fighter, he couldn’t give up. The whole two hour ride was horrible I cried the hole time, but I never lost hope. I held on to every piece of hope & faith until I walked into his room and saw for myself my baby wasn’t breathing. My baby was gone. He wasn’t coming back. I never thought this thing could have happened to me, not in a million years.

My goal now is to let Kayden live on through me by helping other families who have to go down this horrible journey. One thing I want you all to do is live by what I did, always keep your faith and never lose hope. Once you do you’ll have nothing. My prayers were answered this whole time, Kayden is okay now, no matter how much I hurt and my arms ache to hold him I know he is safe and he’s no longer hurting.”

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Kayden’s balloon release.. fly high little one.

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Today is Misty’s birthday. In honor of her birthday, Kayden’s life, and for the many lives that he touched while lighting up this earth, please visit his Facebook page and show your love and support:

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Misty is also in the process of making Kayden’s memorial fund a non profit organization in honor of her son, please visit Kayden’s Kause and help support this wonderful family’s efforts and keep Kayden’s legacy going:

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