Tuesday, September 25, 2012


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!!!!

Friday, August 17, 2012

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.

Wednesday, August 15, 2012

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......

Tuesday, August 14, 2012

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!


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!

Monday, August 13, 2012

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!!!

Saturday, July 21, 2012

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.

Sunday, July 15, 2012

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.

Friday, July 13, 2012

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.

Wednesday, July 11, 2012

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!

Tuesday, July 10, 2012

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!

Monday, July 9, 2012

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!

Sunday, July 8, 2012


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!

Saturday, June 30, 2012

Things I am noticing.....

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.

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!

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......

Tuesday, June 26, 2012

Here's The Deal.......

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.

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!

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. 

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. 

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! 

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.  

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).  

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.  

Sunday, May 6, 2012


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!

Monday, April 16, 2012

Chest Pains and a Heart Cath...

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!

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.
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!

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!

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.

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.

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.

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.

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.

Monday, April 9, 2012

Easter and Heart Update

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!

Monday, March 5, 2012

This and That......and some pics

Let me start by introducing the newest members of our house hold.....Chance and Chase! (They came at the right time, together and pretty much potty trained. They are perfect for our home and our situation. These cute little guys are 3 month old Shorkies and they are brothers. They have brought so much joy to my kiddos who have missed Kirby so much. When we do get this new heart, the boys will have these two little guys to keep them busy.
Saturday was a dance recital for Kaidence and she was so excited. Her brothers were at SIBS day up at the hospital but she had a bunch of groupies to support her dance. She danced to Tangled "I See the Light". She did a perfect job and I loved watching my little miracle dance.

On March 2nd we celebrated Devohn's 8th Birthday. For those that don't know, Devohn is Miss K's heart donor. We celebrate every year with a balloon release. This year we sent 8 balloons to heaven for him, one of which was a spider man balloon. My heart was so very tender that day.

Now to the medical stuff....K's cardio appt. Monday was great. It's my understanding that he is making progress on the list. I cannot help but feel that any day now that call will come. I am so terrified. My emotions are so mixed. I hate waiting knowing what has to happen in order for us to get that call. It hurts my heart. I fear for Kaidence's health as well. More this time than the last time. It will be more dangerous this time around. She just looks so happy and healthy....at times it still feels like it's just a bad dream!

Yay!!!! Kaidence and Carden have had strep throat and fevers!!!! I have to say that having sick kids and knowing any day a heart could come makes me a little CrAzY! This last week, I felt panicked knowing that I had to get them better. Today, at the moment I think things are improving.

So in the time we wait, I pray. Pray with all my heart that what is meant for Kaidence will be. That if she is meant to get another heart, that it will happen. Pray that if another family will be involved in this process that they will be greatly blessed beyond anything that I could ever comprehend. I pray that my family and myself may be prepared for whatever may come our way. I pray that my spirit, my body and my mind will be ready for the roller coaster that is sure to follow regardless of whatever way things go. I pray for Devohn's family, I pray for my daughters life that will be held in the hands of God.

Thursday, February 23, 2012

Happy Birthday!!!!

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!

Today for your 5th Birthday you wanted/had

1. Your bedroom door decorated and a shiny heart balloon.

2. A cake with dolphins and Ariel.

3. A Sewing machine so you could sew your face masks and do 'team work' as you called it!

4. You got a sewing machine. You also got the Little Mermaid talking hair salon that your mom waited in line for 2 hours on black friday after I had originally bought what I went in for. One day you'll understand...Nanna and Pappa gave you a sewing kit and a case full of makeup (BTW, your lipstick tonight was beautiful and VERY pink).

5. You went to preschool and they celebrated your birthday just like any other kids. You took mini pink cupcakes and apple juice to share with your friends.

6. You had a McDonalds cheeseburger Happy Meal for lunch.

7. I begged you to take a nap because you were a little bit grumpy because you tried waiting up all night for me to decorated your door. Therefore, mom really wanted the nap because I couldn't decorate your door until you were asleep (and I was putting together that salon of yours).

8. Dad stayed home and smoked a yummy beef brisket for your birthday dinner because that was what you asked for.

9. You didn't have to clean your room today but I have a feeling it will take you awhile to do tomorrow.

10. Now you are in bed asleep. Hopefully dreaming about something wonderful.

To my Miss K.....Ohhhh, how I love you and pray (especially today) that you have many more Birthdays to come!

There is another new post below...so just keep reading!

Thursday, February 16, 2012

Little Happenings and Saying goodbye to Kirby!

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.

McCaden and Mike made her a little coffin and then we buried her in the backyard. The family came over and we sang her favorite song "We Are Going to the Cabin" and then followed it up with McCaden saying a cute little prayer and Camden doing a gun salute with his cap gun (Grandpa Maddock got a gun salute from serving in the Army so now he thinks it's a pretty cool thing). Then we released balloons that we were given from the kids cousins. We love you Kirby!!!!

Now on to the medical stuff.....things are going well! Kaidence has been healthy and full of energy still. Her heart sounds great although I know the inside is very sick. She continues dance, preschool and speech therapy. She LOVES her dance classes and has a performance coming up March 3rd.... She was fitted for her costume and cannot wait! She is really starting to pick up on preschool things now that she is able to go more consistently. Kaidence is going to cardiology once a month now and her echo and labs still look good. So we just continue to wait for that call. I am not sure that I am ready to send my healthy looking baby girl into such a dangerous, high risk (as the surgeon calls it) surgery but we have no other choice. I think about it all the time while at the same time trying not to think about it. ....doesn't make sense, I know. There are times that my nerves get the best of me and I start to feel down and then there are other times that my heart is so happy and full. I love this little girl so much!!!

Kaidence (like her mom) LOVES to talk! The other day she was eating an apple and talking about how the apple skin is good for her heart. She then told me that "McDonalds apples don't have the skin on them and that's just irritating". She pretends to be healthy but she loves her bacon and french fries.

Next week Miss K will be turning 5!!!!! WOW, I cannot believe that my baby girl is that old. She surely is starting to turn into a little girl.. Both Mike and I have seen it a lot lately. She is very independent. Kaidence's loves doing her preschool homework and I am proud to say that she is a lefty just like her mom! She likes to pick out her own cloths, dress herself, do her own hair (and makeup) and choose her own food. She hates it when her brothers boss her around and tell her what to do and they hate it when she does the same to them. All around it's a normal relationship. Every Friday the kids love having sleepovers in each other's rooms, so that its proof that they are all good buddies when all is said and done.

That about sums it up. Hope all is well with our wonderful friends, family and followers!!!!

Sunday, January 8, 2012

Still Waiting and another BIG Thank You!

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

Kaidence and her family would like to thank the many wonderful people of our community who gathered together to raise money for Kaidence’s second heart transplant through the two fundraisers that were held this month. On Dec. 3, Creative Arts Academy of Bountiful held the benefit concert “Dancing 4 Kaidence, So She Can Dance Too.” The night was a beautiful interpretation of Kaidence’s life through music and dance. Thank you to the many who worked so hard to make this night so memorable. We want to thank Jana Monson who chose to do this for our little Kaidence when she could have easily done this fundraiser to help rebuild her dance studio that burned down this last July. Your sincerity, generosity and friendship have been engraved into our hearts. That evening will never be forgotten.

On Dec. 12 “Cupcakes 4 Kaidence” was held at the Wight House Reception Center in Bountiful. We were in awe at the support we received for this event. We want to thank those who made “Cupcakes 4 Kaidence” a big success. A special thanks to The Wight House for donating their reception center for the event and to Alpha Graphics who created all the posters and flyers. To the many that donated cupcakes, we thank you as well for your time and generosity. A big thank you to the Bountiful restaurants Texas Roadhouse, Marcello’s Italian restaurant, Rumbi’s Grill, PIE Hole and Royal India for the excellent food they provide for the Taste of the Town and to Scoopology for donating the wonderful ice cream. Many thanks to all the local businesses; too many to mention who donated gifts, gift cards and gift baskets, which were auctioned off and to those businesses willing to let us put up fliers in their business. We appreciate the Davis County Clipper for getting the word out and advertising for both fundraisers.

Finally, a heartfelt thanks to all the many friends, family and strangers who came together to help a little girl so she can get a new heart.

With Hope, Faith and Love,

Kaidence’s Family

On December 23rd, we celebrated Kaidence's 4 Year Heart Birthday. I cannot believe that 4 years has gone by. It is always bitter sweet to celebrate this day but this year, even more so.

Christmas was wonderful. Everyone was happy and healthy until Christmas night and then the stomach flu hit us again and carried us into the New Year!

Kaidence had a clinic appt last Thursday. She looks great! Deep down, I keep wondering if her heart really is sick. She looks so healthy and is full of energy. Even when she got sick, she seemed to fair better than others in our house. Truly a blessing indeed. Kaidence continues to go to preschool 2 days a week, dance 2 days a week and speech therapy 1 day a week. She is a busy little girl who seems to be living life to its fullest.

We have now waited for a heart under both extremes. The first time we waited in the ICU with my daughter dying each day before my eyes. You didn't need to be a doctor to see that. The emotions we felt and the heart wrenching things we witnessed while watching others has had a major impact upon my life. However, I cannot forget all the beautiful things we saw and felt as well. The miracles that have also left and everlasting impression. This time we wait from home. Waiting with a daughter who doesn't look sick on the outside but knowing that on the inside her heart is very sick and it threatens her life. Waiting at home has been such a blessing for our family, especially the kids. Such a contrast to 4 years ago. We are able to be together each day and all sleep under the same roof at night. I must admit however that waiting has seemed a little harder this time. Maybe it's because I know what we are in for. Maybe it's seeing her so healthy now and knowing how sick she will be after transplant. It could be the fact that this time she isn't the highest priority which is a blessing but at the same time makes it harder to get a heart. For some reason, I felt more proactive in the hospital like everyday we were trying to fix her and get her a new heart. At home, I feel like I am doing nothing to get her better. I know that is not the way it is.....just how it feels at times. So lately I have taken up this 'nesting' thing. I have cleaned out K's closet and organized all medical equipment and supplies and then moved on to other closets and spaces in the house. I have gone through some old transplant papers and some other things that needed to be done for years. Ya know...those things that are always in the back of your mind and you don't always realize how much they weigh you down. Some emotional things that just needed to be done from her first transplant. That feels good and is keeping me busy. I know things are getting closer to happening....like everything else in life, it's the not knowing the details of what and when.

Thank You all for keeping tabs on us. I will truly try to be better at this blogging thing. I know many keep checking in and not seeing a status update....I promise to update the moment we have any big news. Until then I will try to update as much as I can! Thank you all once again for your love, kindness and support!