tag:blogger.com,1999:blog-30063408659069749562024-02-20T22:57:14.789-07:00Our Little Kaidence"Just when the caterpillar thought the world was over it became a butterfly"Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.comBlogger381125tag:blogger.com,1999:blog-3006340865906974956.post-36857519899722519672013-06-26T09:41:00.001-06:002013-06-26T09:41:32.392-06:00The Brave Little Soul!<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-color: white; color: #333333; font-size: 12.727272033691406px; line-height: 15.454545021057129px;">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!</span></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-color: white; color: #333333; font-size: 12.727272033691406px; line-height: 15.454545021057129px;">The Brave Little Soul</span><br style="background-color: white; color: #333333; font-size: 12.727272033691406px; line-height: 15.454545021057129px;" /><span style="background-color: white; color: #333333; font-size: 12.727272033691406px; line-height: 15.454545021057129px;">By: John Alessi</span><br style="background-color: white; color: #333333; font-size: 12.727272033691406px; line-height: 15.454545021057129px;" /><span style="background-color: white; color: #333333; font-size: 12.727272033691406px; line-height: 15.454545021057129px;">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.</span></span>Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com3tag:blogger.com,1999:blog-3006340865906974956.post-21296870040367808302013-05-07T13:37:00.000-06:002013-05-07T13:37:05.769-06:00<br />
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‘They gave us the gift of life’</div>
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<span class="story_item_date updated" format="date" title="2013-05-03T12:57:00-05:00">May 03, 2013</span> | 458 views | 0 <a href="http://davisclipper.com/pages/full_story/push?article-%E2%80%98They+gave+us+the+gift+of+life%E2%80%99%20&id=22444156#comments_22444156" style="color: #4b8dd7; text-decoration: none;"><img alt="0 comments" class="dont_touch_me" src="http://d2uh5w9wm14i0w.cloudfront.net/images/comments-icon.gif" style="border: none; clear: none; display: inline; float: none; margin: 0px; max-width: 15px; min-height: auto; min-width: auto; padding: 0px;" title="0 comments" /></a> | <span class="number_recommendations" id="number_recommendations_22444156">3</span> <a href="http://davisclipper.com/bookmark/22444156/article-%E2%80%98They%20gave%20us%20the%20gift%20of%20life%E2%80%99#" id="recommend_link_22444156" style="color: #4b8dd7; text-decoration: none;"><img alt="3 recommendations" class="dont_touch_me" src="http://d2uh5w9wm14i0w.cloudfront.net/images/thumbs-up-icon.gif" style="border: none; clear: none; display: inline; float: none; margin: 0px; max-width: 15px; min-height: auto; min-width: auto; padding: 0px;" title="3 recommendations" /></a> | <a href="http://davisclipper.com/bookmark/22444156/article-%E2%80%98They%20gave%20us%20the%20gift%20of%20life%E2%80%99#" style="color: #4b8dd7; text-decoration: none;"><span style="cursor: pointer; position: relative;"><img alt="email to a friend" class="dont_touch_me" src="http://d2uh5w9wm14i0w.cloudfront.net/images/email-this.gif" style="border: none; clear: none; display: inline; float: none; margin: 0px; max-width: 15px; min-height: auto; min-width: auto; padding: 0px;" title="email to a friend" /></span></a> | <a href="http://davisclipper.com/printer_friendly/22444156" style="color: #4b8dd7; text-decoration: none;" target="_blank"><img alt="print" class="dont_touch_me" src="http://d2uh5w9wm14i0w.cloudfront.net/images/print_icon.gif" style="border: none; clear: none; display: inline; float: none; margin: 0px; max-width: 15px; min-height: auto; min-width: auto; padding: 0px;" title="print" /></a><span class="signature_email_message" id="email_content_message_22444156" style="color: black; font-size: larger; font-weight: bold;"></span></div>
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<a href="http://matchbin-assets.s3.amazonaws.com/public/sites/31/assets/40AV_Kaidence4.jpg" style="color: #4b8dd7; text-decoration: none;" target="_blank"><img alt="KAIDENCE STEPHENSON Kaidence in the hospital during her second transplant surgery last fall.
Courtesy photos" class="image_img" src="http://matchbin-assets.s3.amazonaws.com/public/sites/31/assets/40AV_Kaidence4.jpg" style="border: 0px; max-width: 285px; width: 285px;" title="KAIDENCE STEPHENSON Kaidence in the hospital during her second transplant surgery last fall.
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KAIDENCE STEPHENSON Kaidence in the hospital during her second transplant surgery last fall. Courtesy photos</div>
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<strong>BY JENNIFFER WARDELL</strong></div>
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<strong>BOUNTIFUL —</strong> It’s taken the strength of three hearts to keep the light shining in six-year-old Kaidence Stephenson’s eyes. </div>
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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. </div>
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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. </div>
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“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.”</div>
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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. </div>
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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. </div>
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“There’s such a personal side to it,” she said. “I think the relationship has been healing for both them and us.”</div>
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Kaidence thrived on the new heart, growing up healthy and strong. Shauntelle became involved in organ donation advocacy and watched her daughter thrive. </div>
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“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.”</div>
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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. </div>
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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. </div>
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“She just had a biopsy, and it came back and looked really nice,” said Shauntelle. “We just have to keep her healthy.”</div>
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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.</div>
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“We went and walked around the school,” said Shauntelle. “She’s so excited.”</div>
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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.</div>
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“We know what it took,” she said, tears in her voice. “They gave us the gift of life.” </div>
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<a href="mailto:jwardell@davisclipper.com" style="color: #4b8dd7; text-decoration: none;" target="_blank"><em><strong>jwardell@davisclipper.com</strong></em></a></div>
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<span style="font-family: Arial; font-size: 13px; line-height: 18px;"><br /><br />Read more: <a href="http://davisclipper.com/bookmark/22444156/article-%E2%80%98They%20gave%20us%20the%20gift%20of%20life%E2%80%99#.UYkXWHLQfZU.facebook#ixzz2SdYdqu8F" style="color: #003399; text-decoration: none;">The Davis Clipper - ‘They gave us the gift of life’</a> </span>Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com4tag:blogger.com,1999:blog-3006340865906974956.post-35819727504378546582013-05-07T13:32:00.001-06:002013-05-07T13:32:36.898-06:00‘They gave us the gift of life’<a href="http://davisclipper.com/bookmark/22444156/article-%E2%80%98They+gave+us+the+gift+of+life%E2%80%99#.UYlWzbuuwOR.blogger">‘They gave us the gift of life’</a>: 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. ...Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com1tag:blogger.com,1999:blog-3006340865906974956.post-14188851484488166072013-03-07T13:38:00.002-07:002013-03-07T13:45:51.694-07:00Life after K's 2nd Transplant and Laces for Love<div class="separator" style="clear: both; text-align: center;">
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<span style="text-align: start;">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!</span></div>
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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. </div>
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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.</div>
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She was hospitalized the week of her birthday and we celebrated her 6th birthday up at the hospital. </div>
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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. </div>
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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!</div>
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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! </div>
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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. </div>
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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!)</div>
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Until then.....Will you please do me a favor????</div>
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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. </div>
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<a href="http://www.lacesforlove.blogpsot.com/">www.lacesforlove.blogpsot.com</a></div>
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<span style="color: blue; font-family: Georgia, Times New Roman, serif;"><b>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!!!</b></span></div>
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<span style="color: blue; font-family: Georgia, Times New Roman, serif;"><b>To find the drop location nearest you (we are in 10 states) and to read our story, see our blog for details: <a href="http://www.lacesforlove.blogspot.com/" rel="nofollow" style="cursor: pointer; text-decoration: none;" target="_blank">www.lacesforlove.blogspot.com</a>.</b></span></div>
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<span style="color: blue; font-family: Georgia, Times New Roman, serif;"><b>All shoes must be gathered by March 31st so we are in the final stretch! WE CAN DO IT!</b></span></div>
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<span style="color: blue; font-family: Georgia, Times New Roman, serif;"><b>Help us complete our family. Sole by sole.</b></span></div>
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<span style="color: blue; font-family: Georgia, Times New Roman, serif;"><b>Thank you</b></span></div>
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Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com3tag:blogger.com,1999:blog-3006340865906974956.post-48045087105832949172012-09-25T09:50:00.003-06:002012-09-25T09:50:35.045-06:00FABULOUSLY BUSYYes.....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!!!!Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com9tag:blogger.com,1999:blog-3006340865906974956.post-46945711702642836322012-08-17T14:58:00.000-06:002012-08-17T15:07:48.939-06:00Making 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. <br />
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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.<br />
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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!<br />
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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.Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com10tag:blogger.com,1999:blog-3006340865906974956.post-77466746837153418182012-08-15T17:57:00.000-06:002012-08-15T17:59:24.622-06:001st 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!<br />
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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)! </div>
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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. </div>
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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......<br />
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Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com7tag:blogger.com,1999:blog-3006340865906974956.post-40435629631900727532012-08-14T13:08:00.000-06:002012-08-14T13:08:59.859-06:00A New Heart.....A New BeginingDr. 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.<br />
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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. <br />
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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. <br />
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I will update later.....Keep the prayers coming!Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com24tag:blogger.com,1999:blog-3006340865906974956.post-4686368159632658502012-08-14T10:30:00.000-06:002012-08-14T10:30:03.320-06:00It'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!Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com15tag:blogger.com,1999:blog-3006340865906974956.post-69755852334512304142012-08-14T09:30:00.001-06:002012-08-14T09:30:55.376-06:00The 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!Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com7tag:blogger.com,1999:blog-3006340865906974956.post-69586851047247895352012-08-14T07:52:00.000-06:002012-08-14T07:52:10.769-06:00BypassKaidence 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. Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com9tag:blogger.com,1999:blog-3006340865906974956.post-43044307634465842182012-08-14T06:20:00.002-06:002012-08-14T06:20:40.045-06:00First IncisionWe 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.Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com10tag:blogger.com,1999:blog-3006340865906974956.post-8248896300325246422012-08-14T04:31:00.000-06:002012-08-14T04:31:06.277-06:00In SurgeryThey just took back my baby girl......I am so nervous but know ALL is in Gods hands!Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com1tag:blogger.com,1999:blog-3006340865906974956.post-20174412464975042662012-08-13T19:11:00.000-06:002012-08-13T19:11:09.738-06:00We 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!!!Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com5tag:blogger.com,1999:blog-3006340865906974956.post-37652123776202376252012-07-21T12:54:00.000-06:002012-07-21T12:54:22.717-06:00Happy Birthday and CICU status 1AI 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.Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com9tag:blogger.com,1999:blog-3006340865906974956.post-12306058765684967702012-07-15T18:23:00.001-06:002012-07-15T18:23:55.746-06:00Home....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! <br />
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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.<br />
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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.<br />
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I will let you know what happens this Tuesday my friends. Thank You for the kind words and many prayers.Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com2tag:blogger.com,1999:blog-3006340865906974956.post-23807303674592932922012-07-13T23:12:00.001-06:002012-07-13T23:12:54.690-06:00Heart Failure?Happy Friday the 13th (for the last few hours)! Wow, Kaidence has been listed for 260 days!!!!<br />
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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!<br />
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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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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.Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com0tag:blogger.com,1999:blog-3006340865906974956.post-80280534698121032352012-07-11T13:43:00.000-06:002012-07-11T13:44:07.492-06:00Hospital 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!<br />
<br />
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. <br />
<br />
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!<br />
<br />
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.<br />
<br />
Hugs from us all!Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com3tag:blogger.com,1999:blog-3006340865906974956.post-25380728037892938852012-07-10T12:50:00.000-06:002012-07-10T12:50:48.179-06:00Update: Pneumonia and Pleurisy<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiinT2BwwaM8SNzUISlnCRgthdOaC9mDrCR9REHOklYCs8FPCGx-V-aYVxiuT7pLq17TD7XMfLO9mF54uFpOh024v8N3ul5Q5dBQYaQAccl4eJp2KAeZBgG_RcnGoBi7fN5xlIXk3UApnmA/s1600/photo.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiinT2BwwaM8SNzUISlnCRgthdOaC9mDrCR9REHOklYCs8FPCGx-V-aYVxiuT7pLq17TD7XMfLO9mF54uFpOh024v8N3ul5Q5dBQYaQAccl4eJp2KAeZBgG_RcnGoBi7fN5xlIXk3UApnmA/s320/photo.JPG" width="239" /></a></div>
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.<br />
<br />
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. <br />
<br />
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. <br />
<br />
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<br />
K: "Mommy, is my heart coming in a few days"<br />
Me: "<span style="background-color: white;">Honey, I don't know.....Why?"</span><br />
<span style="background-color: white;">K: "Because I don't want to be sick anymore"</span><br />
<span style="background-color: white;"><br /></span><br />
<span style="background-color: white;">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.</span><br />
<br />
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!Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com8tag:blogger.com,1999:blog-3006340865906974956.post-26002974243682745582012-07-09T14:39:00.002-06:002012-07-09T14:39:33.618-06:00Pneumonia and pleurisyLast 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!Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com5tag:blogger.com,1999:blog-3006340865906974956.post-69428063021413191612012-07-08T22:51:00.001-06:002012-07-08T22:51:28.805-06:00CICUI am doing this on the phone so it will be quick. K I is being admitted to the CICU for pneumonia. Waiting for cardio to look at the heart side of it. They have called her doc to come in. Please pray for Miss K!Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com3tag:blogger.com,1999:blog-3006340865906974956.post-50023076684862149912012-06-30T21:56:00.001-06:002012-06-30T21:56:29.496-06:00Things I am noticing.....<br />
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">So I figure that a quick update is better than no update. Two
things that I have noticed over the past week are that Kaidence's appetite is
blah to non-existent. The girl is not eating, even the foods she would
always ask for 2nds on. Her weight I am sure is continuing to drop which
then narrows her donor pool;( I feel terrible because truth is that for
so long she has been a great eater and I didn't have to worry any longer about
what she ate. The girl was always hungry. To be honest she drove me
crazy because she always wanted to eat. So I finally taught her how to
make her own ham and cheese sandwich.....her favorite. I haven't paid any
attention for a while and I think this problem has been going on a little
longer than I thought. Once cardio let me know that her weight has been
trending down, I have kept a watchful eye and seen a HUGE difference in her
eating AND drinking. My gut tells me that tube feeds are right around the
corner. I really don’t want to start that again.<o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-size: 13.5pt;">The last thing
that I have noticed is that Miss K doesn’t enjoy playing with friends like she
did before. She no longer wants to play, ride her bike, jump, play in her
playhouse or do much of anything. It broke my heart the other day when
her two friends came over to play and she told me that she didn't want to play
because she was tired and needed a nap. So not a Kaidence thing to do.
My friend brought the same thing to my attention the other day when K was
playing at her house with her little girl. K told her she needed to go
home and nap. Let me remind you that Kaidence was my youngest child to
stop naps! Kaidence doesn't slow down!<o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-size: 13.5pt;">So there you have
it. Nothing exciting going on but just the things that I need to have
documented. Please keep Miss K and her 2 heart friends who are waiting
for hearts also in your prayers. Thanks friends for checking in......<o:p></o:p></span></div>Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com2tag:blogger.com,1999:blog-3006340865906974956.post-82639596230037066032012-06-26T14:21:00.000-06:002012-06-26T14:21:42.328-06:00Here's The Deal.......<br />
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">Ok....Here is the deal! FB is an awesome asset to keep in
touch and spread the word on what is happening with Miss K quickly. The
down side is that I never get things documented on my blog and am therefore
missing out on a lot of journaling. Therefore, I am going to TRY using my
blog as the MAIN place that updates will be. Likely I will post that
there is a blog update on FB with a link over to this blog. So, when we
get a heart.....this blog will be the place to come.<o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-size: 13.5pt;">Like I said so
much has happened and nothing documented. For example, In May Miss K graduated
preschool. To think we almost didn’t send her because she was waiting for
a heart. Glad we didn't hold off because that heart ticker in the corner
of her blog is still counting up!<o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-size: 13.5pt;">We have had a few
heart caths since my last post on here. We have treated some spotty
rejection episodes since then. Gone to the cabin, admitted Kaidence into
the hospital for an illness that sent her little body into shock (but she
recovered quickly) and other things here and there. <o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-size: 13.5pt;">Kaidence's was
scheduled for a heart cath for July 3rd. It was quickly decided by her
cardio that it was much too long to wait. She felt that K's heart
pressures needed to be checked out. They had been fine all along but
regardless we cathed her heart last Tuesday. What a blessing that we did.
Turns out that Kaidence's hearts pumping pressures are high. We
have since learned that her heart biopsy came back clean and rejection free.
That was news we haven't heard for a very long time. The only
bummer was that with such a clean biopsy it only left one reason for the high
pressures....Heart Failure. K's heart is starting to fail. We
started her in a diuretic to help remove the extra fluid from her body in hopes
it will help with the pressures and keep the heart from working too hard. We
are also talking about tube feeds again because she is losing weight and no
longer being that great eater. We briefly talked about the next steps of care
if her heart continues in this direction. <o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-size: 13.5pt;">That same week,
just days after the heart cath we received the amazing news that her PRAs
(antibodies we have to avoid in a new heart) had gone from 46% to ZERO.....This
was never expected because it rarely ever happens to this extent. These are
antibodies that have been in K's body since 8/2010 when she went into Severe
AMR (antibody rejection) and we spent all that time in the CICU. For her
these antibodies are 'bad guys’ and her body has held onto them ever since.
That is until now. This is nothing short of a miracle!<span class="apple-converted-space"> </span><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-size: 13.5pt;">What does this
mean for Kaidence? At first it meant that now ANY heart that matched her
blood type could be given to her, opening up the donor pool. However,
after cardio discussed this with others it was decided that we still keep these
antibodies on her 'avoid' list for transplant even though she technically no
longer has them. WHY??? Your body has memory cells. Cardio worries
that it could be possible for those memory cells to be triggered by these
antibodies if her new donor heart tested positive for them. Then we could
be back to where we were in 2010 and NOBODY wants that. So for now it stinks
because it does make it harder to find that perfect match. However, in
the long run it will be a blessing and give Kaidence a better chance and
hopefully more time on this next heart with less rejection. I think in
the end we will be glad that things played out the way they have. <o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-size: 13.5pt;">We are amazed that
these antibodies are no longer in her body. I was hesitant to post our great
news on FB because we have some heart buddies that are also waiting for hearts
with antibody issues. I felt bad having such wonderful news come our way.
Then I decided that if I could give anyone HOPE then it was what I should do.
Sometimes things happen that cannot be explained. In the end the
thing we have to remember is that the doctors aren't in charge and we aren’t in
charge. One person is in charge and that is our Heavenly Father.
It's so hard to let go of the control (even though we have never had it).
<o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-size: 13.5pt;">So just like I end
all these post....We will keep waiting! Some days the wait is easier than
others and some days the need for a heart seems more urgent then others.
In that same thought, we have been blessed and we are grateful.
Things could be much worse and for many, it is. <o:p></o:p></span></div>Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com2tag:blogger.com,1999:blog-3006340865906974956.post-54384618602872352412012-05-06T13:42:00.000-06:002012-05-06T13:47:19.840-06:00Thoughts.....Well friends, it's another Sunday and I am home with Kaidence and Carden today while Mike took the boys. I hate not being at church together as a family. Something I really do miss (most of the time). So today I sit home and listen to Paul Cardall's music. My heart has been touched. Lately (ok maybe the past 5 years) I have had so many thoughts going through my head. Lately my thoughts seem so random. One minute it's complete trust that Kaidence will get a new heart and then other days its the complete opposite. We have now waited over what Cardiology thought the wait would be for a new heart for Kaidence. I think the more time that passes these negative thoughts creep into my head. It seems that a natural response to fear is preparing for different scenarios in regards to that fear. As if we think of every possible thing that could happen from miraculous to devastation we will be prepared when it does happen and then the heartbreak won't be so traumatic. I know it doesn't work that way but for some reason that is what I do. Last time we waited for a heart, every night I went to bed I would plan her funeral in my mind. Don't get me wrong, I was optimistic. Ask any doctor there, they thought I was TOO optimistic about things. But I had the right to HOPE and that is what I did. However, night time has always been completely different. When it's silent except for the beeping of hospital machines in the background. My mind would wander. As it does these days. <br />
<br />
Most the time I do well keeping hope and faith in my heart. I try not to question the "why" of all that is happening. However, this last Friday we stopped in at the Creative Arts Dance Academy grand Re-opening. We had been working in the yard all day and were not dressed appropriately (or clean for that matter). This is were Kaidence takes dance on Wednesday. This is also that Dance Academy that put on the benefit concert for Miss K last December. Last summer, this dance studio burn down. I was so touched that they would do a fundraiser for OUR family when they were trying to rebuild their dance studio. These are amazing people. The new studio is beautiful, elegant and the feeling of beauty and peace within in the walls is marvelous. I know it may sound funny talking this way about a dance studio but it is what it is. The staff and girls are unique. As Kaidence walked around the new building with her mask on she was greeted by so many sweet friends. This is a place that has Kaidence written all over it. I can feel it in my heart every time. As she danced with some of the girls my heart was full and broken all at the same time. As these sweet girls took her by her hand and danced with her I couldn't see the smile on her face because of her mask but I could see it in her eyes. At that same time it also seemed obvious to me for the first time in a while that my daughter was sick. That her skin color looks pale and grey compared to other little girls, that she has a mask on her face, I could see a bump under her shirt from her feeding tube, her neck veins pulsing with each beat of her heart ....I could see that her heart is broken. I have always been able to envision Kaidence dancing so gracefully as she grows into a young women but this day I questioned if it would ever happen. From time to time I feel like life slaps me in my face and jolts me back to our reality. To the places my mind wanders in the quiet of night. <br />
So what do I do? I try my best to move forward each day with HOPE and a prayer in this mommy's heart. I try to count EVERY single blessing that we have been given. I enjoy the time that I have all my kids together under one roof and thank my Heavenly Father for giving me that gift.<br />
I have Faith that if and when the time is right, my little girl will get that new heart!Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com11tag:blogger.com,1999:blog-3006340865906974956.post-62626996611554183402012-04-16T15:43:00.006-06:002012-04-18T10:17:12.262-06:00Chest Pains and a Heart Cath...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3iVbtRaJ6tNCJvGmKjJ9l0MitqjNFO7SQDAzy7bYnek0F2Jdq8psqMQKIB6PYcLoRh6wBHFaEddEA9qR_vF32Wu-RriDh7JOFjQgYIIVr339mnLLcZShPqcG4Y7ToQEeFrvCGwmfinHLG/s1600/DSC_5219.NEF"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3iVbtRaJ6tNCJvGmKjJ9l0MitqjNFO7SQDAzy7bYnek0F2Jdq8psqMQKIB6PYcLoRh6wBHFaEddEA9qR_vF32Wu-RriDh7JOFjQgYIIVr339mnLLcZShPqcG4Y7ToQEeFrvCGwmfinHLG/s320/DSC_5219.NEF" border="0" alt="" id="BLOGGER_PHOTO_ID_5732775511476672178" /></a><br />First of all I apologize for not updating my blog during this last week. Normally, I keep it updated with things going on but I didn't have time to grab my laptop before I took K to the hospital Friday. I PROMISE that when we get a heart it will be posted here as well as FB!<div><br /></div><div>Kaidence had a blessing back in Sept that talked about the doctors timing be precise! I feel like over the last week we have seen that promise starting to unfold.<br /><div>Friday Kaidence woke up crying that her chest hurt. This is a first for her. I listened to her heart and it seemed to be beating faster than usual. I called cardiology and took her right in. We looked a little rough since we didn't take the time to get ready for the day but some things you don't mess around with. Kaidence's echo looked the same, her ECG showed lower voltages. Last time the lower voltages were a sign of Kaidence's rejection. They did labs on her, all of which came back within appropriate limits. After the ECG cardio decided to get Kaidence in to the cath lab that same day. Mike wasn't at the hospital yet and he really wanted Kaidence to have a blessing so I went and found Eric one of Kaidence's NP's that took care of her with her first heat. He graciously agreed to come and give her a blessing. It was beautiful. About 4:00pm she was taken into the cath lab. She was so excited to be at the hospital. She was grabbing nurses, hugging their legs saying "I get to stay here with you." She was at peace but I was worried because last time her heart didn't behave so well. However, this time she did great! </div><div><br /></div><div><br /></div><div>A big fear of ours and cardiology was that Kaidence was in rejection and we would have to deactivate her from the transplant list for a few weeks until the rejection cleared. This became a greater concern as we learned how truly sick Kaidence's heart is. She has arteries within the heart that have totally disappeared! Things are looking a little scary in there and Dr. D had a hard time finding any healthy tissue to biopsy. Her heart is that sick!</div><div><br /></div><div>The results showed that K was NOT in rejection (BIG sigh) but inflamed. If arrhythmia's or chest pains continue, cardio will talk about a pacemaker. However, they seem to think we will have a heart sooner than later and we hope that she can hold out. </div><div><br /></div><div>We have been blessed with tender Mercies from our Heavenly Father this week. How grateful I am that things happened they way they did this weekend. Although it rocked our boat big time, we were blessed. For the first time in 7 months I knew without a doubt that Kaidence really needed a new heart. Comparing how sick she looked last time to how she looked this time it was hard for me to process that her heart was "that" sick. Monday cardio and I had discussed the possibility that maybe we could wait a little longer to get her a new heart. Waiting until more symptoms pronounced themselves. Of course they would cath her to be sure. The plan was to discuss this more in 5 weeks. Now I was even more torn! However, we are now on the same page, knowing that this little girl needs a new heart SOON. Although I found this frustrating that she looked so good that I could no longer be sure what to do I had to remind myself that my prayers had been answered for Kaidence. When we found out that she needed a new heart I pleaded with the Lord to not let her health and quality of life deteriorate like it did last time. All I wanted was for her to get the chance to live like a healthy little girl and for the most part, that has happened. With dance and preschool twice a week she has kept busy. She loves jumping on the trampoline, riding her bike, swimming and playing. </div><div><br /></div><div>Friday was the day that I was supposed to take Kaidence to the Kindergarten Orientation........KINDERGARTEN! She was so excited to go but instead we ended up going to the hospital. However, on Saturday as K was wondering her room, guess who walked out of the room next to us.....her kindergarten teacher for next year. She was as shocked to see us as we were to see her. K was excited to see her.</div><div><br /></div><div>Saturday late afternoon we were discharged form the hospital. From that point on K has not felt well at all. She is fatigued, sick to her stomach and refuses to eat and drink. I haven't used her G-tube in about a year but had to so she would stay hydrated. Vomiting and fast poopies seem to have made the problems worse. We have been in very close contact with cardio. I think our biggest concern is this illness is a result of her heart getting sicker. However, Camden started throwing up last night and Carden has fast poopies too. I feel a little better about things but we will go and see cardio in the morning. </div><div><br /></div><div>We are taking it easy around here. Dr. E is out of town and Dr. K her surgeon is also out of town. Hoping that everyone gets back and settled before this heart comes. </div></div>Kaidence's Mommyhttp://www.blogger.com/profile/18390902237713190021noreply@blogger.com2