The Brave Little Soul!

This write up is close to our hearts for it is how we have always felt Kaidence's journey came to be.  However, Kaidence has two little boys and their families that were also "Brave Little Souls" wanting to unlock the love in peoples hearts.  Truly.....they have succeeded!

The Brave Little Soul
By: John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," she asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through her suffering and God's strength, she unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love.Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer.Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever.It was good. The world was a better place. The miracle had happened. God was pleased.

‘They gave us the gift of life’

May 03, 2013 | 458 views | 0  | 3  |  | 

KAIDENCE STEPHENSON Kaidence in the hospital during her second transplant surgery last fall. Courtesy photos

BY JENNIFFER WARDELL

Clipper Staff Writer

BOUNTIFUL — It’s taken the strength of three hearts to keep the light shining in six-year-old Kaidence Stephenson’s eyes. 

The little girl, who loves dance and her three brothers, had her first heart transplant when she was just 10 months old. Her second came late last year, after a sudden bout of coronary heart disease attacked the first heart she had been given. 

These days, Kaidence is looking forward to the upcoming summer season. Her mother Shauntelle is grateful for the gifts of two loving families whose children are no longer around to experience the same thing. 

“It’s a very bittersweet thing,” said Shauntelle. “Kaidence is doing all the things a little girl should be doing, and we’re overwhelmed with the opportunity the donor families gave us. At the same time, we’ve gotten to know Kaidence’s first donor family and the sweet little boy who will never have those same opportunities.”

Kaidence’s own heart first failed her when she was only a few months old, and she was put on life support after becoming dangerously ill during a family vacation. She made the news later that year when she became the youngest patient in Utah (at the time) to be implanted with a Ventricular Assist Device, a heart pump that improves blood flow. The VAD kept her alive for 47 days, until she could be implanted with a new heart. 

Shauntelle and her family remain in contact with the family of the little boy whose heart saved Kaidence’s life. The Stephensons have pictures of him, and Shauntelle thinks of him often. 

“There’s such a personal side to it,” she said. “I think the relationship has been healing for both them and us.”

Kaidence thrived on the new heart, growing up healthy and strong. Shauntelle became involved in organ donation advocacy and watched her daughter thrive. 

“If you were to see her on the street or playing with the other kids, you’d never know the difference,” said Shauntelle in an interview with the Clipper a year after the first transplant. “When I look at her, it’s hard for me to see the sick little girl she used to be.”

When Kaidence turned four, however, a surprise bout of coronary heart disease put the little girl back on the transplant lists. While the Stephensons waited for another miracle, groups such as Bountiful’s Creative Arts Academy helped raise money to defray some of the immense medical costs faced by the family. 

Last fall, Kaidence received the heart she needed. Though a bad reaction to some of her immune suppression medication meant that she started 2013 sick, she’s since recovered and is back to dancing and playing with her brothers. 

“She just had a biopsy, and it came back and looked really nice,” said Shauntelle. “We just have to keep her healthy.”

Though concerns about germs have kept her out of public school before now, if everything goes well the family plans to let Kaidence enroll in school this fall.

“We went and walked around the school,” said Shauntelle. “She’s so excited.”

Shauntelle has written to the family of Kaidence’s second donor, though they haven’t yet received a response. Even if they never do, Shauntelle will keep the memory of their gift firmly in mind.

“We know what it took,” she said, tears in her voice. “They gave us the gift of life.” 

jwardell@davisclipper.com

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Read more: The Davis Clipper - ‘They gave us the gift of life’ 

‘They gave us the gift of life’

‘They gave us the gift of life’: BY JENNIFFER WARDELL Clipper Staff Writer BOUNTIFUL — It’s taken the strength of three hearts to keep the light shining in six-year-old Kaidence Stephenson’s eyes. ...

Life after K's 2nd Transplant and Laces for Love

I cannot believe that I remembered the password for this blog!!!!  I have no words for my lack of blogging, so shall we just move forward???? Great!  First off, according to my last post....Kaidence is still in the hospital but obviously, she is not.  She came home on August 29th! See, this picture is proof!

Kaidence came home with a new heart and to a new (temporary) house while our house was waiting to be built.  She recovered very well and I was pleasantly surprised with how well it all went.  In December I noticed a decrease in energy, eating and an increase in GI issues. She became weak, stopped doing dance and school and really had no quality of life. Over time she started quickly loosing weight.  There was a 2 pound weight difference between her (days away from turning 6) and my skinny 2 year old. We started reverting back in our eating, taking medications and speech.  It wasn't until a few weeks ago and 3 hospitalizations after that we figured out that it was her Cellcept medication that was making her so sick. It causes severe GI issues as a side effect.  We had the same issue with the first transplant as well.  Her vomiting and reflex caused the voice issues to return. 

I don't want to post the sick pick of her because it's a little too disturbing to see my daughter all skin and bones. She weighed in at 33 pounds, that is down from 41.  But she looks better in the other pics so I will post those.

 She was hospitalized the week of her birthday and we celebrated her 6th birthday up at the hospital. 

Her brothers had influenza and were not able to see her on her special day but her good heart buddy Matthew came up for a tea party and to test out her new Easy Bake Oven.  They are too cute together.  

She said it was the best birthday ever.  She also got a new scooter and she took it for a few test drives through the hospital. She also had a few 'after hour' races with some nurses.  She loved it!

Here she is......on her 6th Birthday!  That is the girl that I have missed.  The one with the big smile, sparkle in her eyes that could talk your ear off.  She had been gone for so long that it feels exhilarating to have her back! 

Currently she is doing fantastic!  Her favorite thing to eat is Ham sandwiches or she loves just bread with Miracle Whip.....Nasty!  Whatever gets her eating again. We are still tube feeding her at night to get her weight back up.  We are getting there.  She currently is 36.8 pounds.  Slow but progress.  Regardless, she now is giving her body enough fuel to give her energy.  Today she is playing with her friend Miss M.  This is their first play date since her transplant.  Needless to say its been a long winter.  

This Saturday, Kaidence will perform in the ballet of Alice in Wonderland as a tea cup.  She is thrilled and her costume is gorgeous.  We have only been back to dance for about 2 weeks but she caught up quickly.  I knew she was feeling better when she was dancing down the hospital hall and singing.  Always a sign for me.  I will post pictures of her performance (I really will!)

Until then.....Will you please do me a favor????

 This is a friend of mine who has a beautiful family here on earth and a darling Sunshine Angel boy waiting for them in Heaven. They are looking to adopt 2 children to complete their family. Will you please support this great cause?  There are pick up locations all over the US. If you are in the area you can drop your shoes by my house or at one of the many drop off locations. 

www.lacesforlove.blogpsot.com

Join as as we collect 40,000 gently used but still wearable shoes THIS MONTH to raise the funds needed for the adoption of two children. We can take ANY type of shoe - boots (we LOVE boots, since they pay us by the pound), flip flops, high heels, tennis shoes, dressy shoes, sports shoes, cleats, anything. For men, women and children. As long as there aren't gaping holes . . . and they match . . . we'll take them! You declutter, we earn much needed adoption money AND the shoes go to third world countries. WIN, WIN and WIN!!!

To find the drop location nearest you (we are in 10 states) and to read our story, see our blog for details: www.lacesforlove.blogspot.com.

All shoes must be gathered by March 31st so we are in the final stretch! WE CAN DO IT!

Help us complete our family. Sole by sole.

Thank you

FABULOUSLY BUSY

Yes.....we are still here and Kaidence has been home for awhile.  She is doing Fabulous......We have been busy with the move and new heart appt.  I promise to get a post with pics of her transplant soon!  Know that things have been better than ever expected and I will post soon.  Thanks for checking in!!!!

Making Progress....

I have a bunch of pictures and videos to post but this place keeps me so busy...Kaidence has been very sleepy.  We were able to force her awake yesterday long enough to go on 2 walks.  That was an order from Dr. K! The crazy thing is that her chest doesn't hurt her (except when she coughs) but it's the Picc line in her leg.  It has made her ankle and foot swell.

Todays chest x ray looked a tiny bit better.  She still has a lot of extra fluid that she needs to get rid of and so today we will take more walks.  Her echo also looked better today and so they are decreasing her Milrinone!  She is starting IVIG (good antibodies) to help her fight off this Parainfluenza.  Overall, her cough is getting better. They seem pleased with how well she is doing.  The thing holding us back are her lungs. I must add that she is SO PINK!  Her cheeks are rosy, I cannot stop touching them because I think she must have a fever with cheeks like that.

I love seeing all the staff that stops by to see Miss K after they learned of her getting a new heart.  They are so excited for her.  I am so grateful that she is surrounded by those who both care for her and love her as well. To all of you that have dropped things off for us....THANK YOU!  You are so thoughtful!  Thank You for taking such wonderful care of us.  To my family and my hubby who are home packing up my house while I sit with K.....I couldn't do it without you.  They have been wonderful to care for my boys, house and the extra bonus of packing for a move!

To all of you who have followed this blog....we are grateful for your many prayers over the years, your kind comments and just knowing that you were here for us.  Some of you we have met but many we have not.  Thank you for putting your heart into my little girls journey.

1st day with a new heart!

Today has been so busy.......Kaidence had a great night.  After being extubated at 3:00 she had to wait until 8:00 to drink.  I think that she asked me every 5 minutes what time it was. At last she was able to drink and drink she did! Last night Kaidence woke up asking for the "game basket for when she got her heart". Back in December we were given an incredible basket full of games, gift cards and candy.  We told the kids to save it for when K got her heart.  That way we would have something fun to do together at the hospital.  Sure enough, Kaidence (drugged and all)went through that basket last night and she was so excited. Today she has been a little sleepy.  It's funny because she will open her eyes, try to sit up and ask to play a game.  Then she is asleep within 10 seconds of that.  I promise sweet girl, you will have plenty of time to play all those fun games!

Today she needed to go get a new picc line behind her knee because the one in her arm needs to be removed due to the blood clot.  They are also planning on pulling 2 lines in her groin and 2 lines in her neck.  She has spent the whole day sleeping. Dr. K,  her surgeon wanted to have her up and walking today but that is unlikely since she is still sedated from the procedure. Also, she has an effusion on her left side because Dr. K was unable to get a chest tube in due to scar tissue (likely from the artificail heart 5 years ago). She is pooling blood in on that side but they are hoping it will be absorbed by her body. She still has in 3 chest tubes but she is dong well with her bleeding.  Today she also recieved a blood transfussion (thank you to all who donate blood)! 

This afternoon her aunts and brothers came to see her.  They held her hands but she slept the whole time. Her aunts decorated her room and her brothers brought her roses from Angel Grandma's (k's namesake) garden.   

So sorry this post is all over the place.  Lots going on and little brain power left in me.  My heart and mind have been with the family who gave us this heart.  My prayers are for them. So much gratittude for saving my childs life as their world crumbbled around them.  Please continue to pray for them.  Much love to you all......

A New Heart.....A New Begining

Dr. Kaza just came out.  First things first....he was shocked at how sick Kaidence's heart was.  He went on to say that she was much sicker than she ever led on and that this new heart was badly needed.  He said that he hadn't quit seen a heart like hers before.  Her heart was encased in scar tissue that was as hard as bone.  The  heart was restricted and barely moving.  He wasn't sure that Kaidence would have lasted much longer.  The timing he said was in Gods plan and it was all meant to be.

Dr. Kaza said that God has a plan.....he just got into town last night.  Also, when matching for a heart you can take an extreme difference in sizes.  This one was the perfect size for her.  He also said that often when grafting a heart you sometimes just have to make it work but not this time.  This new heart he said "fit to Kaidence like Legos fit each other". He said it was an absolute perfect match, size and all for my girl.

Oh how I pray for this sweet family wherever they may be.   Much love to you all......I am going to see my baby girl.

I will update later.....Keep the prayers coming!

It's Beating...

"It's Beating"......These are the words that instantly bring tears to my eyes. It's so hard to understand how someone could give us such a gift. I am filled with HOPE! Devohn's heart has carried her with grace. Although it became very sick, it kept going. Never giving up, never missing a beat. With how severe K's Coronary Artery disease was....I think we were all shocked as to how well her heart handled things and for how long. So at last, Devohn's heart gets to rest. Knowing it gave life to another little girl. Giving a family enough time to learn her favorite color, the sound of her raspy little voice and for her to know her brothers. Finally, it gave her enough time to get a new heart so that her journey on earth could continue on. We love you Devohn, you are always in our hearts!

The Heart is Here!

Kaidence's new heart is here! As I type this they have started putting it in. Things seem to be going well. So much love already for the sweet little child that is saving my daughter. Religion, race and nothing else matters when it comes to Organ Donation. It's nothing but true, unspoken love for another!

Bypass

Kaidence is now on bypass.....and the heart should be landing at the airport around 8:00am and then it will likely be flown from the airport to the hospital by helicopter. Her bleeding is under control and things seem to be going well.

First Incision

We just got a call that all lines are in. Dr. Kaza is getting ready to make the incision. The other surgeon has already looked at the new heart and is removing it. It will take about 1 1/2-2 hours to fly it back. Thank You for the many prayers for our family and all families involved.... Words cannot even explain how blessed we have been. Kaidence is here because of a sweet little boy named Devohn who will ALWAYS be our Super Hero! They are forever a part of our family. How healing it has been to get to know them over the last 5 years. To think that once again we are on this journey. We have been given another chance with Miss K..... To these two families our hearts are humbled with nothing but pure love and prayers for you.

In Surgery

They just took back my baby girl......I am so nervous but know ALL is in Gods hands!

We have a HEART!!!

We have a HEART!!!  We got the call at 5:59pm.  We ask for prayers for Devohn's family and our new donor family.  May they find a little peace in their hearts as a their childs heart continues to beat on.  To all our dear friends waiting for hearts.....You are next!!!  Yes, Thursdays meeting will still go on!!! Check back here for updates.  Love to you all!!!

Happy Birthday and CICU status 1A

I am posting from my phone so this will not be a long post. First of all HAPPY BIRTHDAY McCADEN. Today my oldest turned 11 and I am not home. This makes me so sad:( My mom will come up to the hospital today so I can go home for his bday dinner of smoked brisket! Yesterday was K's cardio check up. It was decided then to admitt her to the CICU for Milrinone for worsening heart failure. This morning they attempted to place a long term way to give IV meds (picc line). The attempt failed and so we just sent her downstairs to have the pros do it. There is a good chance that she will now be in the hospital until a new heart comes our way. On a positive note she has been up to a status 1A. This puts her in the grouping of highest priority for a new heart Life is crazy but we are a little crazy ourselves I suppose. We are praying that another persons hearts will be touched in a way that our Miss K and her heart buddies can get new hearts very soon.

Home....at least for a few days, hoping for more!

We are home!!!  I must say that by the time we made it home late Saturday afternoon I was exhausted.  So it was decided that being in the hospital would not get us anywhere over the next couple of days because Dr. E wants to see Kaidence have a few days to get a little better from the pneumonia before she considers putting her on Milrinone.  So home we are....for now. She is on extra lasix as well as tube feeds:( We have clinic on Tuesday. If her symptoms still lean towards heart failure becoming worse she may be admitted to the CICU to start the Milrinone and then hopefully moved to the floor a day or so later. So we are home, hanging out and enjoying this time as much as we can...just in case!

Also it was discussed that if a heart offer became available that we would have to pass it up due to how bad her pneumonia was.  Her cardio wants to be sure her lungs have healed before she is thrown on bypass.  She would prefer waiting 2 weeks before a heart comes but may take one with only waiting a week if it seems to be the PERFECT match! If that happened K would be brought into the hospital for x-rays and labs to be sure she was healed enough.

So that is it!  I must say that telling Matthew that Miss K was leaving broke my heart.  When he found out he just put his face down in his blankets.....Made me so sad.  Then he asked if I could come sit by him for awhile.  He is such a cute stinker.  Those 2 kids had a great time together and Chrissy and I can race with a wagon and IV pole like no other.

I will let you know what happens this Tuesday my friends. Thank You for the kind words and many prayers.

Heart Failure?

Happy Friday the 13th (for the last few hours)! Wow, Kaidence has been listed for 260 days!!!!

I debated over posting because I want to post pictures of all the things that Kaidence has been doing to keep busy and all her visitors, but I am too tired tonight.  So I will divide and conquer (I hope).  Tonight I will update with whats going on and tomorrow will be a post of pics!

So today's plan was to go home....obviously, we didn't.  Her chest xray showed fluid still in her lungs but nothing too bad.  As far as the pneumonia, the docs feel they have good enough control over it to send her home.  That was the plan.  However, when her cardio saw her this morning she saw and heard some things that concerned her in regards to Kaidences heart.  She heard a gallop in her heart, her liver is lower, her labs look a little screwy still and K's belly is distended with fluid (heart failure).  The girl no longer has a belly button!  Also, she is not really eating or drinking much if at all.  All these all possible signs of increased heart failure.  K had an echo today and that still looked the same but Dr E still feels that something is off.  I am so glad she listens to her intuition. She is concerned that the pneumonia has pushed her over the edge and into additional heart failure. She wants to keep an eye on her.  If things persist we may need to put her on IV Milrinone to help her heart function better.  That would definitely be a signal if a turning point and I am just praying that someone will say 'yes' soon, before it gets to that point again.

Kaidence has been started on tube feeds again at nights but will likely go to bolus feeds during the day.  They have increased her Lasix (diuretic) and therefore she is up all night peeing.  It;s really hard to unhook her and hook her back up to everything multiple times a night when you are half asleep.  She is still requiring some O2 at night and we are hoping to not need it tonight.  We will see.

We have had great visits from family and friends.  Mike even brought up K's little doggies because she has missed them so much.  She was so happy to see them.  K's buddy Monica came up yesterday and today.  Her cousins and grandparents have been by as well. She keeps pretty busy with Mr Matthew and so do Chrissy and I.  I think those two wore each other out yesterday because today they were a little more mellow.  They did get their bedtime stories together tonight.

There you have it!  Our main concern is no longer the pneumonia but the likely possibility that she is starting into more heart failure. I will update with any news.  Thank You to my sister, mom and Mike's mom for taking the kiddo so Mike could make it to work some of the days this week. Thanks for the prayers for my sweet girl.  To our wonderful ward....Thank You for all the wonderful dinners you have made for Mike and the boys this week. Love and Hugs to you all.

Hospital Sleepover!!!

Time for an update!  Let me start by saying that Miss K is looking MUCH better today and acting more like herself.  Still not as active but she is getting there. After much convincing she walked a short distance yesterday but that tuckered her out for the rest of the night.  Last night at 11:00pm she woke up begging to go upstairs to play with Matthew (her heart buddy who is also waiting for a new heart).  I told her no, because it was night time but she was convinced that it was morning.  Finally she went to bed and the  first thing she asked for this morning was Matthew.  So cute!

Back to the medical stuff.  This mornings chest xray looked worse.  It showed pneumonia in both lungs as well as fluid. It is common for these xrays to be about 1 1/2 days behind progress.  Clinically, she is showing improvement so they feel confident that in another 2 days her xray will look much better.  They are giving her extra doses of lasix in hopes to dry up the extra fluid in her lungs.  If things in a couple of days don't look better then we will discuss cleaning out the lungs.

The great news is that today we get to leave the CICU and go to the floor.  Kaidence and Matthew are so excited because they get to be neighbors.  I think Kaidence thinks its like having a sleepover at the hospital and they have big plans.  Cardio even cleared them 'hanging out together'.  Kaidence 's docs have made a goal for her of getting up and walking 3 times today.  Matthew says he is going to take her on 100 walks and then tomorrow 200 walks. Not so sure she will make it far on her one walk but I am glad he has such lofty goals for her in mind. I think he will be good for her to get her up and moving this junk around and out of her chest.  Hopefully, they can be therapeutic for each other. I just hope those nurses on the 3rd floor are ready for this big sleepover! Let's get this party started!

That's about it for now.  Today I have a good feeling about things to come for Miss K.  I don't know why, but I will hold onto that feeling as long as I can. We will Miss our great nurses downstairs but will hopefully see them again soon when she gets a new heart.  We are excited to go upstairs to see our nurses who we also love and have a great time with our heart buddies.  We will keep you all posted.  I think we will be here at least 2-3 more days, maybe a little longer.

Hugs from us all!

Update: Pneumonia and Pleurisy

Today Kaidence is pretty darn wiped out.  She is pretty weak and in a lot of pain with the pleurisy. We have come down from 8 liters of high flow oxygen to 5 liters of high flow.  It sounds like she has a hurricane in her nose. We are starting up tube feeds tonight because she is not eating, but I cannot blame her.  Her echo yesterday looked the same, so hopefully her heart will hold up well with this infection.  Tomorrow she will have another chest xray.  If the pneumonia still looks consolidated then they will go into her lung and scrape out all the junk and drain it.  I am really hoping that things will just look better on their own.

Many are curious what this does to her listing for transplant.  As of now they will keep her listed.  If they do get a heart offer they will meet together as a team and discuss the risks of transplanting her with this.  I think things are heading in the right directions, its just very slowly.

Today her CRP is down from 39 to 29 so that is great.  Ideally it should be zero, but we will get there.  Her white count has also dropped by half, another good sign that things are trending well.  Her blood has shown some clotting issues.  They said it's like she is on heparin but she isn't.  They are trying to figure out what is causing that issue.

I must say that my heart broke a little the other day at home.  Kaidence was sick and the day before we took her into the hospital she asked
K:     "Mommy, is my heart coming in a few days"
Me:  "Honey, I don't know.....Why?"
K:    "Because I don't want to be sick anymore"


All I could do was hold her in my lap and say a prayer with my little girl and ask that if a heart is meant to be for her that one will come her way.

All in all we are just hanging out today while Kaidence sleeps.  Maybe I can get some reading done today. Thank you all for keeping us in your prayers and for the kind deeds you are doing for my family at home.  Much Love to you all!

Pneumonia and pleurisy

Last evening was tough for Miss K. She was a pretty sick kiddo. So she has bacterial pneumonia in the right middle lobe. She also has pleurisy in that lung as well and it causes her a lot of pain. She is on 8 liters of high flow oxygen to help with her breathing to help with that lung because it is also partially collapsed. Her CRP 37.6 so she has a good infection brewing. We will likely be here for a few days. Thanks for checking in on us. Praying she can get better quick so she can get that new heart!