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!!!!
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.
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!
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"......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 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 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.
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.
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!!!
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.
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.
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.
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!
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!
I 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!
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.
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.
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.
I have Faith that if and when the time is right, my little girl will get that new heart!
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!
I hope that everybody had a terrific Easter this weekend! At last, we made it out of town after cancelling the trip 4 times! We got Camden a waterproof cast for his hand and left. We felt strongly that we just needed to go! Transplant doesn't let you travel too far when waiting for a heart so we went all the way to Logan. My kids were so excited to go out of town that I had to double check and be sure they knew we were taking them to Logan and NOT Lagoon! They swam their little hearts out and I was sure to let Miss K know that this may be the last time she can swim for awhile. She swam until her lips were blue. It felt great to get away for a time, even if it was short lived. Sunday we took some time to walk around the grounds of the Logan temple and take some pics. That added a great spirit to Easter this year!
Things here are holding steady and crazy all at the same time! In fact, everyone is doing well. Friday I get to register Kaidence for Kindergarten (yes, you read that right). I am trying to decide if we go the route of traditional or do I put her in the Chinese Immersion program? I cannot believe how big she is getting.
Today was her monthly cardio appt. Things still look the same. They were kind today and told me they wanted to give me a heads up that Kaidence could get a heart any day now. They have had quit a few heart offers for her this last week. I cannot help but feel the time is coming soon. It makes me sick to my stomach to think about what it means for another family. I fear what could happen to Kaidence as well. The second time around is very risky. Its a very long road and Its hard to process in my heart and head. All I can do is pray that whatever happens will be meant to be for all involved.
Please keep us in your prayers. Prayer for my sweet little boys whom I am sure can sense the tension in the air no matter how normal we try to make life. Prayers that Kaidence may be healthy, happy, peaceful and brave. Prayers that Mike and I can juggle it all. Prayers that we may know what is right and meant for things to come. Prayers that when the time comes I can bravely hand my daughter over to the surgeons with faith. Most of all prayers for whomever will be giving her a new heart and prayers for Devohn's family for the heart that today's beats within her. Above all, prayers for Heavenly Fathers will to be done.
I am now off to try and get things ready for whatever may or may not come our way!
Happy Birthday to my 5 year old miracle! Kaidence, love you more than you'll ever understand. Praying for many more Happy Birthdays for you! Hugs to Devohn's family for giving me ALL 5 of these Birthdays!
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Today my heart feels full so I guess there is no better time to write a post. I know that so many things have happened since last writing but I always think I will remember when I get around to it and then I don't. Therefore I will pick up once again with the recent things and then fill in anything I may remember.
First of I need to document that we had to say goodbye to our sweet little doggy Kirby. Kirby has always had mental issues (like she could only turn one direction). Over the last couple of years her brain started determining and she needed to be put down. How heartbreaking that was. She was only 9 years and was such a big part of our family. She was great with the kids, took turns each night sleeping in their bedrooms and loved going to the family cabin. Our house seems so lonely and my floors are so dirty without her around. The older boys went with us to the vet and held Kirby as she passed away. I am so proud of McCaden and Camden for choosing to do what was right for Kirby even though it hurt their little hearts to do it. Maybe doing something that hurts so badly because you love someone or something so much helps them slightly look at the gift that Heavenly Father gave to us when he gave us His Son. Now I know that this is in no way a comparison but I think on a kids level it can give them a little seed on this subject to plant in their hearts.
You know how you get so far behind in something that it just seems overwhelming to get yourself caught up? Well that is how I feel about the blog at the moment. I had hopes and goals of posting pics and day to day details of our Disney World Trip among other things. Oh well.....
I must post about Cupcakes 4 Kaidence. I don't have pics yet, but when I do I promise to post at least one. What an AMAZING night that was. I was shocked by how perfect everything was. It was put together so well. They even had a table set up to honor Devohn.....Kaidence's Heart Donor. The table told a little about him through pictures and words. It also displayed Superman, his favorite Super Hero! It was so great to have others honor him and all he has given to us. It was beyond any of my expectations. The decorations were perfect, the food fabulous, Cupcakes were fancy, Ice cream cart was loved by all and the photo booth was a hit with the kids and families! BTW, I was given copies of all those pics you all had taken in the booth. Looks like many of you had a great time! Also, the Face painting was a HUGE hit with the kids, although for my kids it turned more into body painting. A big Thanks to Paul Cardall for the piano music. I am so glad that you brought your family and hopefully you had a great family night together. The auction was a bunch of fun and I cannot believe the wonderful community that we live in! We had an impressive turnout. The money earned far surpassed any goal that they had. What a blessing it will be for our family as we use it to care for her medical needs. Thank You to all those that came out and supported this fundraiser. Many drove a great distance to come. To those that supported this event although unable to make it, we appreciate you.
Here is a Thank You that we had posted in our local paper:http://http://davisclipper.com/view/full_story/16999292/article-Thank-you-to-the-community?instance=secondary_stories_left_column
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