Our Little Kaidence

Still Waiting and another BIG Thank You!

2012-01-08T19:14:00.002-07:00

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

more: The Davis Clipper - Thank you to the community

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!

CupCakes 4 Kaidence and Creative Arts Academy!

2011-12-10T10:15:00.004-07:00

PLEASE DON'T FORGET ABOUT CUPCAKES 4 KAIDENCE THIS MONDAY NIGHT!

Come and enjoy a family night with your family and friends. Taste of the Town will be taking place at Cupcakes 4 Kaidence and you can buy food from some of the local restaurants in the area. The proceeds will go to her fund. Now I don't know much of anything going on with this event since it's all been planned by our family and friends and kept a surprise BUT I have heard that some pretty amazing things have been donated to the auction. I have also heard that the kids will have things for them to do as well.....so bring them all! Of course you won't want to miss the beautiful piano music of Award Winning Pianist Paul Cardall. Paul's life has also been blessed by the heart of another. Paul and Kaidence are heart transplant buddies. His music is uplifting and inspirational. His songs are part of our life......after hearing him and Monday, I am sure they will become part of yours as well!

Cupcakes 4 Kaidence

Wight House

95 N. Main Street Bountiful

5-8 pm - Open House

A HUGE Thank You to CREATIVE ARTS DANCE ACADEMY. The night was truly inspirational. The dances and narration complimented each other perfectly. It was amazing to watch these dances and listen as her blog told her story of Hope! As I listened I couldn't help but go back to those times in my mind and heart.

Seeing Kaidence dancing on stage was one of those memories I will always treasure. Dancing seems to be the one thing missing from her life and as crazy as it sounds.....it seems to complete her. It is something that is 100% Kaidence. It's a perfect way for her to express herself, be a normal little girl while at the same time keeping her muscles strong and healthy for her next transplant. I think dance lessons are truly a blessing in her life at this time. How grateful I am that see can experience these things while she waits for a new heart. I am also grateful to the many wonderful friendships that are being built through these opportunities.

Waiting at home is a totally different experience than waiting in the ICU for a heart. We are so grateful to be home. I am hoping that we can continue to do so the whole time. To watch Kaidence's body start to fail after seeing her so healthy and full of life would truly devastate me. I have noticed that I have much more anxiety this time around. I think much of it is knowing that we are not at the top of the list and that her disease would be a sudden death without any warning. I always refer to it as the "ticking time bomb" and that is how it feels. Before we could gauge things a little more with her symptoms. Maybe it's knowing that I have no control over what happens. Whatever it is, I will work through it.

Kaidence had an appt last Monday. Her heart still looks like it's working well. No plan to do another heart cath and look at her Coronary Arteries any time soon. I just pray that they are not getting any worse. As far as her heart rate.....it's been perfect! It seems calm and steady and for that I am grateful. Kaidence has been a little more sleepy lately. Nothing too extreme so I will keep an eye on things and hope it's just a growth spurt. I know that she has grown 1.5 inches in the last month.

Something that I cannot believe I forgot to tell you.......in October Kaidence passed her sleep study. That means no more high flow O2 at night!!!!! We gave back the equipment and I hope my power bill will reflect it too. She seems to have done well without it. The surgery worked. Also, she is now going to speech therapy every week to work on how she uses her voice. Because she did have the paralyzed vocal chords, she found that she could talk louder on the inhale of breath. She is learning how to use her voice the right way and then we will work on the volume aspect. So far, she is making great progress with it.

We are so grateful to the many doors that have been opened to our family. We are being blessed and Heavenly Father is guiding ourselves and others. I am always in awe as to how things just fit together when it's all part of the big plan.

A Little Update and DON"T FORGET..........

2011-11-27T11:41:00.016-07:00

I truly am so sorry for going this long without posting. Just consider that no news is a sign that things are still the same. I want to write a post all of its own for our Disney World trip. We went from November 1-11 and had a wonderful time. I am so glad we went the week we did because they said that from that point on it will be crazy! We had a pass for Miss K, this allowed us not to have to wait in the lines for rides. That was such a blessing. We left our little Carden home and took the two older boys and Miss K. I will try posting a video from when we told them we were leaving.....It's so funny! I will post about ALL we did (and we did a LOT) another day. Thank You Nanna and Pappa for taking us on this dream trip......we had a MAGICAL time.

Now that we are home we have been busy getting ready for Christmas. All of Disney World was decorated for Christmas. We even went to the Mickey's Very Merry Christmas party. It was my favorite part but then I came home to Halloween decorations still up. I took care of that pretty quickly though.

Kaidence seems to be doing well. The last day of the trip Kaidence was pretty sick with Influenza. She had a terrible cough, sore throat, headache, body aches, fever, chills and was extremely fatigued. She wouldn't walk at all. We were worried as to how we would get her on the plane and endure a 4 hour flight. She looked terrible. WE picked up some Tamiflu in Florida and Mike gave her a wonderful blessing. Within a couple of hours Kaidence was up running around and you would never have known how sick she was. How grateful I am for the power of the Priesthood in our lives.

K's cardiology check ups have been stable. Last week we had some scary heart rhythm issues but they seem to be resolved. We should have the final report tomorrow for the 24 hour study we did. Kaidence has been in the transplant list for 31 days! I am so grateful that we could spend 11 of those days on vacation and making beautiful memories that we will have forever. Everyday, K asks me when she is getting her new heart. She says she needs one soon before her heart gets too sick and then she will have to go to Heaven. She says that she wants to stay here with us. That little girl is so smart!

We are so grateful for many things. How blessed we are to be waiting for a new heart at home. Hopefully that can continue. We are grateful that Heavenly Father is in charge. He will orchestrate the plan that He has for Kaidence.

Our hearts are once again touched by the many that have reached out to support Cupcakes for Kaidence December 12th and the Creative Arts Academy Benefit Dance Concert coming up this Saturday December 3rd! Both events will be amazing!!! I cannot believe my family, friends and the community that has put all of this together for us. Many have not even met Kaidence. We were so surprised to learn of all these things that have been put together for our Kaidence. When I was told to watch how many windows would open for us I had never imagined anything like this.

OLD BLOG POST FROM THIS WEEK 4 YEARS AGO (11/22/2007) WHILE WAITING FOR HER FIRST HEART!

Happy Thanksgiving! Mike, myself and the boys have had a wonderful Thanksgiving together. We woke up and drove to the hospital to see baby sis on our way to Coalville. It was wonderful to see all of our family and it was fun to spend family time with the boys. They had fun taking the 4 wheelers over to the "farm" to see all of Aunt Karen and Uncle ken's animals and of course the big tractor. Dinner was wonderful as always. Mike and the boys are going up to Ogden to spend the night with all of the cousins. I have stopped by the hospital to spend some time with Kaidence tonight.Kaidence is very swollen tonight and I hope that they can get that under control soon before we are dealing with wet lungs on top of everything else. She has had a fever again today. Her white blood count only dropped from 22.1 to 21.6 and the CRP 7.2 to 7.1. I think I was hoping for a bigger jump like we had the last few days. The other cannula site is starting to look more infected and I think they will clean that out as well tomorrow. I am praying that we can get this infection cleared fast and that nothing else is affected by it. We can't re-list Kaidence until her wounds are healed which could be a couple of weeks. Not sure though because I have not spoken with Doctor Everritt for a couple of days and we are not totally sure what her thoughts are. We had hoped to speak with her before Thanksgiving so we could at least know what the plan was and what we were looking at so that we didn't have to wonder and worry all weekend. The little glimmer of hope that we could possibly all be home together for Christmas is gone so we will find a way to make due. We have so much to be grateful for and I could probably write a whole blog on this topic. However, we are so Thankful for the wonderful support of all of you. We honestly could not due it without all that you do. Thank You for following the blog and caring for us. We are grateful to the many nurses and doctors that take so much time caring for Kaidence. We know that they honestly do the best they can and that they want what is best for our little one. Of course, we are so grateful for the gospel and the unconditional love of our Father In Heaven. I have seen more families here turn back to the gospel after their kids have become ill than one would ever imagine. Trials can teach us so much, but only if we let them.Happy Thanksgiving and we love you all. Savor this time of year and hold your loved ones close. Spend more meaningful time with your family then ever before and get back to basics. In the BIG picture it is all that matters.

Re-listed & CupCakes for Kaidence!!!!

2011-10-27T15:44:00.014-06:00

First of all I want to invite you all to join us for Cupcakes 4 Kaidence. Here is a link to the CupCakes 4 Kaidence blog. Or check out her Cupcakes 4 kaidence FB page! This is a fundraiser that is being put on by my amazing sisters, family and friends for Miss K! I cannot believe all they have done and was shocked to learn they were secretly planning this. We hope that you will help spread the word!!!!! Thank You all for loving Miss K!

Miss K's cardio appt monday went well. It was nice to get everyone on the same page. Ya know that Disney World vacation that has been in the works for a couple of years? The one that was getting canceled because K needs a new heart? Well, I was shocked to hear cardiology tell us that we need to go. You feel a little better about things when cardio gives you their blessing on something like that. My boys have NO IDEA! So, please keep it quiet. I am feeling a little overwhelmed knowing that it's back on and I am not ready. I am thinking of leaving baby home so that I can really focus on my 2 older boys. They need it but I am still torn with what to do. My kids will be so excited. The boys never complain about all the times something fun gets canceled because K is sick. They totally deserve this trip!

Wednesday we met with the surgeon. I am sure he thought I looked crazy because I have welts/hives all over my body. Today I went and saw the doc for myself and got on some steroids for it. Seems to be helping. So if you see me and I look a little rough, lips or eyelids are swollen....you'll know why! Back to the surgeon. Heart Transplant the second time around is highly risky. What else do you do though?

Today Kaidence was re-listed. She is officially on the list. She is a status 2. An estimate wait time for her is 3-6 months. It scares me to wonder if her coronary arteries will hold out long enough for her. It's such a hard thing wanting your daughter to live but knowing the only way she will get that chance is when tragedy hits another family. I cannot wish for that. I would never wish that a family would lose their child so that mine could be saved. I wish that no parent ever had to think of such things! My prayers will continue to be what they were the first time. That IF a family was faced with such heartbreak that their hearts would be touched and they would want to share that heart with another child. I feel strongly that Devohn, K's heart donor has his hand in a thing or two. He is fighting hard. With all that her little heart has been through.....it just keeps going!

With the same time of year approaching when K was originally listed, I have found it interesting to go back and read post from 4 years ago. Here it is from 4 years ago today. http://4mykaidence.blogspot.com/2007/10/kaidence-continues-to-poop-sleep-all.html
Please don't forget about CUPCAKES 4 KAIDENCE!!!!! Now please go and help spread the word!

HOME

2011-10-21T21:03:00.003-06:00

First things first.....Happy Birthday to my wonderful hubby!!!!! Kaidence sang Happy Birthday to Mike this morning into the phone from the hospital and Mike said it made his birthday because he could actually hear her sing to him!

This is post is going to be sporadic. Today I feel discouraged. I think mainly because I am so tired. I don't think straight when I am tired. Hopefully tomorrow I will feel ready for all of this.

We are home. We still do not have many test results back. I do know that as of now her rejection is not completely gone but in control enough that she can be re-listed. That is a relief! We are awaiting the antibody test and will have those results on Thursday at cardio. Dr. E will present Miss K once again at the transplant meeting with the other transplant docs throughout the valley this Tuesday and Wednesday. This way you get many minds working together. She will be re-listed this Wednesday.....Big sighhhhh!

Kaidence looks and feels great. She is full of energy. Her appetite is incredible. Dr. D commented today that with how bad her coronary arteries are that he doesn't know how her pressures still look great and how her heart is still getting enough blood....but it is. I will take that as another blessing!

Thank you for checking in on us......

What we know at the moment.........

2011-10-20T11:11:00.009-06:00

I haven't spoken with Dr. E yet so I don't know too much. I do know that K's CAD is still pretty severe. They tried some different medications while in the heart cath hoping that it would relax the arteries. It didn't really make any difference. During the cath K's heart rate to slow from 130 to 70. This could be because of the medication or restricted blood flow from either the narrow artery or the catheter. They were planning on sending her to the CICU to watch and briefly talked about placing her on a pacemaker. Looks like our DisneyWorld trip is an hold for a long while.

As of late, her heart rate has stabilized. They will send her to the floor tonight to be watched.

UPDATE: Spoke with Dr. E and she seems to think that we need to re-list Kaidence. We shouldn't have a problem getting her listed for a new heart as long as her biopsy comes back 'clean'. If she has any rejection.......Kaidence cannot be listed until it's all cleared up. So we are praying that her heart tissue looks good and rejection free so that we can get her listed asap. They are changing her Rapamune back to Cellcept. These are antirejection drugs. Rapamune and wound healing do NOT go hand in hand. Therefore we will take her off that medication today and start back on the Cellcept. We are hoping that the surgeons will still allow Kaidence to be listed with that medication still in her system. The worry is that if she did get re-transplanted with this medication in her system her sternumotomy won't heal.

We still are waiting to meet with the surgeons & nutritionist. Wow!!!!

I will post more as we get test results. We are hoping for 1) Being rejection free 2)low antibodies (this will open up the donor pool). 3)Re-listing her ASAP 4) Her sweet little heart holds out long enough for her to get a new one.

Today seems like a dream. Not my favorite dream but a dream none the less. I cannot believe we are really doing this so soon. I have many mixed emotions about everything. I have grown so attached to our sweet donor family. No matter what happens, we will always be family. They have given us what no one else could. They have changed our lives for the better. I hope they know how grateful they are for what they have given to us and for the relationship that we have with them. They are wonderful people. I love that little angel heart that has been beating within her chest!

Ready To Rock!

2011-10-20T08:00:00.003-06:00

They just took Miss K to the Cath Lab. It should take 2-3 hours. Dr. D is doing her cath and he is the one that did it 4 years ago to get her listed. He is a great guy and I have complete trust in him. Kaidence was so excited last night.....she couldn't sleep. She LOVES this place. She had asked if we could play 'Eye of the Tiger' for her as she went into the cath lab. That totally cracked me up. Well, I didn't have the song ready SO I had to sing it for her. Now that we are all pumped full of adrenaline......we are now ready to fight!

How I count my blessings that she loves her mission in life. I have already started to see Heavenly Fathers hand in many things. Those taking care of Kaidence will be guided and directed, I KNOW that will happen. Thank You for your prayers. Gotta run to all of our meetings now. I will post ASAP!!!!!

Bumping up the Heart Cath!

2011-10-18T15:20:00.005-06:00

Modays appointment was bumped to today because of the stomach flu that I had. Kaidence's heart function still looks good but now her heart shows that she has another heart valve leaking. Her Aortic valve. One that has never leaked before. Dr. E doesn't seem to think that it is related to the CAD but her gut tells her to bump up Kaidence's heart cath to this week. We would have done the cath today but she just ate a banana while waiting for Dr. E ;( Her heart cath will be this Thursday!

I can't help but think this leaky heart valve is Heavenly Father's way of making sure the timing in things works out for Kaidence. I do not doubt that His hands are guiding things along. If she needs to be re-listed....lets get it done! If things are improving then what a blessing that will be!!!!

Who knows what they will find on Thursday. I have a feeling that it will be a big, busy day for us. If she is re-listed, it will be the same week that she was listed 4 years ago. Crazy huh? Maybe on Mike's Birthday (his bday is Friday). Am I ready to do this again? Not so sure but I guess I am as ready as I will ever be.

I do feel that Kaidence maybe does need a new heart. It's a hard thing to think about. This little heart within just keeps working and fighting hard for Kaidence and I have no doubt that it will do that for her until she is ready for a new one. It came from an amazing little boy. We feel peace and comfort. We are grateful for your many prayers in our behalf and would be so thankful if they would continue. Thank You for all the kindness you have shown. We really couldn't do it without you!

Many Thanks!

2011-10-10T12:28:00.010-06:00

A sincere Thank You to all who have prayed for Kaidence and for those that fasted yesterday. I even know some little children that chose to fast for Kaidence. That touches my heart deeply. We feel so much love and peace in our home. Even moments of joy in our hearts. That my friends is what your prayers are doing for us. Please keep them coming.

Today was another clinic visit. It will be a busy week with different appts. We have a total of 5 doctors appointments this week.....yikes! Cardio went well. We met with Dr. E and she confirmed the 'game plan'. Things are ready to go. We will set aside the day after her heart cath to meet with all the different teams if we need to list her. Some of you may know that we have had a big trip in the making for years. That trip is to take place next month. Tickets have been purchased for a trip to DisneyWorld. The findings at the end of the month will determine whether or not that trip will still take place. Until then we will wait and count our many blessings!

You may start to see us out and about a little more. PLEASE, if you are sick stay away. We would love to visit with you but Kaidence getting sick would cause many problems for her at this point. It could even keep her from getting a new heart. We may venture out to church in a few of weeks. If you plan on taking your child to church sick....please let us know so that we can keep Kaidence away. Miss K loves going to primary and she needs it just like other kids do. She may be sporting her pink mask but hopefully she can get out a little more.

Todays echo still looks good. In fact, her leaky heart valve looks improved. Still no signs of the coronary artery disease on her echo. We are watching things closely. Her next heart cath is on the 27th. Dr. E has been out of town since the day of her heart cath. I was finally able to talk with her and let her know what Mike and I have decided. I also let her know that I recognize that it's out of my hands. I went on to tell her that we have been fasting and praying for her as well as Kaidence. She is grateful for the prayers. We all may not believe the same but in the end our prayers are all heard by the same God and those prayers are all meant to bring good to another.

How good it feels to turn it all over to Heavenly Father. I am grateful for the good days that we have. We are being blessed. Thank You all for your kindness. We have been blessed by many good deeds. The food that is filling my freezer is such a blessing. Our pharmacy gave her a gift certificate for the both us us to go get manicures together. She will LOVE getting her nails painted. What little girl wouldn't? Our lawn was mowed by a wonderful ward member. The cards we receive with kind words cheering us along are appreciated. To our sweet friends at Grow Up Great .......Thank You for the dance classes for Miss Kaidence. She is SO EXCITED!!!!! You know her all too well. You have given her another opportunity and moment to be a little girl. I cannot wait to watch her dance until her hearts content. Hoping for many more years of dancing to come!

We are full of gratitude for all that we have been given.

Elder Scott has recently counseled: “Trust in God … no matter how challenging the circumstance. … Your peace of mind, your assurance of answers to vexing problems, your ultimate joy depend upon your trust in Heavenly Father and His Son, Jesus Christ” (“The Sustaining Power of Faith in Times of Uncertainty and Testing,” Liahona and Ensign, May 2003, 76, 78).

I have loved this talk

http://lds.org/general-conference/2003/10/the-lord-thy-god-will-hold-thy-hand?lang=eng&query=craig+(name%3a"W.+Craig+Zwick")

Please Join Us!

2011-10-06T11:52:00.003-06:00

Dearest friends and family,

I wanted to let you all know that on Sunday we will be holding a special fast for Kaidence and her doctors. Our sweet ward family will be joining us and we would love to have you all remember Miss K in your fast and/or prayers.

This is from a conference talk from years ago.

"Fasting in the proper spirit and in the Lord’s way will energize us spiritually, strengthen our self-discipline, fill our homes with peace, lighten our hearts with joy, fortify us against temptation, prepare us for times of adversity, and open the windows of heaven."

"Fasting, coupled with mighty prayer, is powerful. It can fill our minds with the revelations of the Spirit." Joseph B. Wirthlin

We testify of the real power of fasting and prayers. It brings knowledge and it brings peace. What great blessings these two things are. We know that Heavenly Father will guide us as to those things that are meant for Kaidence. That she will be able to full fill her mission on this earth no matter how long or short that may be. We trust in Heavenly Father....We have Faith in His plan for her!

Thanks and Love to you all!

Some have asked about why we fast and what it is. Here is a link to a talk explaining fasting
http://lds.org/general-conference/2001/04/the-law-of-the-fast?lang=eng&query=fasting

Monday's Appointment

2011-10-05T08:30:00.008-06:00

Monday's cardio clinic was fine. Her echo still looks the same and so that its good news for now. Things are all lined up and ready to go to re-list her for a new heart. We should be able to get her listed within 24 hours of those changes. Cardio will move quickly! Until then we just watch, wait and pray that nothing happens during the time between. Her next biopsy will be at the end of this month. Did you realize that it was 4 years ago this month that Kaidence was listed for her first heart transplant? October 16th to be exact. It seems all to familiar.

We chatted with Rainbow Kids about paper work that needs to be drawn up for Kaidence if something were to happen to her. It will entail 'what measures' we would want taken in the case of an emergency. We don't have to use the paperwork but IF we needed or felt that it was time to stop and let her go.....we would have the paperwork necessary to do so. Such yucky stuff to think about. Hoping to not ever use it.

Kaidence is doing great. She is feeling well and wants to go and play. This house arrest gets old pretty darn fast for a 4 year old but she hardly ever complains. We are praying that this stomach bug that has been gracing our home for the last week will somehow skip over Kaidence and her weakened immune system. Prayers! All the boys and Mike have had it already. McCaden was recruited to it last night. We came home from the temple to a puking child. Oh how I pray that Miss K can avoid it!

Friday we were able to get family pictures done. That feels like a big accomplishment. Carden was a terror through it and Mike had the flu.....but they are done! We stayed home for conference weekend and were able to enjoy all the sessions. I cannot wait to go back and read some of those talks.

Kaidence is so excited for the cold snowy weather, crazy girl. She has been begging us to have a fire in the fireplace. She keeps telling us we need to because it's 'so chilly.' Tonight, we will be having a cozy fire with hot coco and maybe some s'mores. We are trying to settle into the normal routine around here again and I think that we are doing pretty well with it. Better than I thought. I am able to let her go and do things on her own around the house and not hover over her 'in case' something happens. That has been a HUGE blessing. We know that whatever happens, things in time will be ok for us. We know that no matter what, Kaidence will be great. I have put everything in Heavenly Fathers hands and turned it all over to Him. We will do what we can for Kaidence but in the end....He is in charge. We will continue to wait on the Lord for guidance and keep looking up!

Thank You to my dear friends and family that are helping out with my kiddos. It's such a blessing to not have to haul Carden to cardiology (that just amplifies the stress). For those that have brought in wonderful meals and freezer meals.....Thank You. They are a blessing to us. After a long day, it's so nice to partake of something that was made for you out of love. We don't feel alone and forgotten.

Thank You all for your prayers. I informed Kaidence's doctor the other day that for just as many prayers that are going out for Kaidence, the same are going out for them. She appreciated that. Your prayers mean the world to us. I have faith in your prayers!

Picking up the Pieces

2011-09-29T22:49:00.003-06:00

I am sorry to wait so long to post. I know that we have many wonderful people checking in on Miss K. Truth is that we really don't have much more info than we did before.

Today she finished her 6th dose of IV steroids. For the first time ever.....she wanted to come home. Normally, she cries when its time to leave her friends at the hospital. She was ready to get back and play with her brothers.

Kaidence is physically doing well. She has been pretty tired the last 2 days but cardio seems to think that the rejection may be catching up to her. Tonight, being home with her brothers seemed to lift her spirit and level of energy. She even ate a good dinner (Thanks to one of my MANY wonderful friends). In 2 weeks we will try to get back to her normal activities and let her live as normal of a life that we safely can.

We bumped her echo up a day earlier because of the fatigue. Her echo still looks great. When people have Coronary Artery Disease certain parts or walls of the heart don't have good movement but Kaidence's are moving well. Her heart just hasn't gotten the memo yet as to how sick her arteries are. I pray it stays that way!

The shock is still so raw but things are starting to set in a little more. We have talked with Kaidence and she will help us make the decision on whether or not we list her for a new heart. She knows that either way we will be ok. Now some may think that you cannot let a little 4 year old help make this decision BUT Kaidence is different. This little girls understanding in some areas is far beyond mine. She knows her heart is sick but she doesn't feel sorry for herself. She lives her life to the fullest. She is so happy despite all she goes through. Over the years we have talked about death when she has brought it up. She tells me what she thinks heaven will be like. When letting her know the other day that she could help us choose what we should do she said that when her heart got sick that she wanted to and be with Jesus. I told her ok and then we talked some more about what she thinks heaven will be like and who will be waiting for her. I don't ever want her to feel like she cannot move on because of how sad we will be. However, the next day she woke up out of bed and one of the first things out of that little girls mouth is "I want to get a new heart".

So as of now and if or when the time comes we will re-list her for a heart. She may change her mind and that is ok too. If she wants to fight to live, who am I to tell her she can't? I don't know what Heavenly Father has planned for my baby girl. I hope and pray that if she has to leave us for this time that it will be in a peaceful way and time. I don't want her to get that sick again. This little girl knows she is loved and treasured. Her spirit is precious. She has no idea of how many hearts and lives she has touched but one day she will know.

The boys are hanging in there as well. I have such amazing boys. I am so proud of them. We are trying to be honest as to what could happen but focus on the now while still keeping that communication open for them to express themselves. I don't want them to be afraid to talk to us or ask us questions. Kids are smart and they need honesty on their level.

Monday we will have another echo. If ANY changes are detected they will re-list Kaidence. Her next heart cath will be on October 27th. I hope and pray that somehow and someway this disease will no longer be or that it will lessen in severity and she can be safe. It shouldn't happen but I know it can happen, I just don't know if its part of Heavenly Fathers plan for her.

I want to thank you for the love and kindness you have shown. Your prayers are lifting me out of the torment that has had my heart for the last few days. I ask that you also please pray for her wonderful medical team. I pray that they will be in tune to promptings even if they may not understand the reasoning. Your prayers for our family are the greatest thing we could be given at time. Mike and I are still trying to figure it all out.

"Be not afraid, only believe" Mark 5:36 If Kaidence isn't afraid, why should I be?

The Post I Hoped to NEVER Post

2011-09-27T13:43:00.005-06:00

WARNING: This post is not sugar coated. So if you are looking for a positive post....please stop by another day!

Yesterday's heart cath turned out to be a nightmare. I keep asking myself it it really happened the way it did. We left for the hopsital at 5:30am for our heart cath. I felt such great peace and had no worries at all about the outcome. I honestly felt that it was going to look great and that we wouldn't have to return for a whole year. My mom was going to meet us up at the hospital to plan out DisneyWorld trip for this November. Instead everything started falling apart.

E the transplant coordinator came out to get us instead of having the pager they give you alarm. I knew something must be wrong. When we got there the whole transplant team was awaiting us. They shared the news that Kaidence has Coronary Artery Disease. It was not seen on last years biopsy but it is rather obvious that it is there. They showed us last years pictures compared to this years.....the difference was obvious, even to the untrained eye. Cardiology talked about the possibility of re-listing Kaidence for a new heart. It would be harder for her to get a heart the second time around because she has developed antibodies against 65% of the population. That narrows the donor pool drastically. Or we could choose not to re list and just enjoy the time we have.

One thing about this disease is that at any given time she could have a heart attack or stroke. It was explained to me that they would likely be fatal. They said that if this did happen she would die quickly and painlessly. I cannot believe we even had that conversation. It terrifies me.

This disease is more common in transplant patients years down the road. Why she has it.....no one knows. It could be the rejection episodes or something else.

To top it all off, as Mike was getting the car to leave the hospital cardiology chased us down to tell us that Kaidence was also in rejection and that she needed to stay in the hospital for treatment. We should be here until Thursday. She will once again be on house arrest. So if you are sick......you know the drill by now (especially with winter coming.)

THE PLAN
1. Medications- They are putting her on 2 new medications (for the disease and more for the rejection)in hopes that they will help slow down the disease. I asked how well they worked. The reply was "if they worked great, we would have all of our transplant patients on them." So I guess it sounds like a last ditch effort.

2. Watch and wait- Did I ever tell you how I LOVE waiting? We will treat the rejection and CAD. In about a month (right before we are supposed to leave to Disneyworld) she will have another heart cath to check if the disease is progressing. If it looks like it's still progressing then we will decide if we want to list Kaidence for another heart. I don't know what we will decide.

3. Frequent Appts- We will keep in close contact with cardiology. She will still get her echos and they will closely watch her heart function. At this point, her heart function is good and has not been affected. If things start to change, that would be another indication of that things are getting worse.

The crazy thing is that everyone thought that things were better than they have been in awhile. Her last few echos have looked great and shown improvement in function AND her leaky valve. How can all this be getting better but then we have this lurking in the background? It just doesn't make sense.

We are tired, heartbroken, uncertain and I am trying so hard to not be angry. I don't want to be. I cannot help but wonder why? I think I am still in shock and unsure of how I can do this again. How my family can do this again. I have great anxiety over her having a heart attack/stroke and me not being able to save her. I feel numb. How do you move forward with 'normal' life? These are just some of the nonstop things going through my mind. What we will do....I do not know.

I pray that I will start to feel the love and comfort of our Heavenly Father. I pray for guidance in the days to come, I pray for another miracle and I pray for peace. I pray that Heavenly Father still knows my heart, he knows I want what is meant for Kaidence. I pray that he will take care of everything and that I may be prepared for whatever comes our way.

I feel that I am always asking for prayers. I need them, Kaidence needs them...our whole family needs them. I am craving the comfort and peace they bring.

We are so grateful for the many wonderful years that we have been given by Devohn's family. The heart that is in her little chest has given us so much. It is because of them that I have had the opportunity to know my daughter, her personality, her love of life, her strength...her Faith. This is hard on them as well. Please remember them in your prayers.

I will post when I know more....

Our Day Today!

2011-09-11T16:26:00.002-06:00

Yesterday was just one of those days that you don't know what to do with your kid. Do you take them back to the hospital or leave them home and try to work through it? As I said in the earlier post, we have really struggled with K's O2 levels. Today, she has still needed extra oxygen and her cough continues to be awful. I am starting to worry that pneumonia will be right around the corner if I can't clear this junk out of her.

Last night was the balance between keeping your kid comfortable without suppressing their respiratory system. I decided to cut the lortab dose in half for her in hopes that it would still help her feel better without making her sats take a nose dive. It seemed to work well until the fever came. I then went for a full dose of Tylenol keeping my fingers crossed that it would both ease the pain and relieve the fever. It worked well and I dumped the Lortab since its no longer needed (I don't want that stuff hanging around when it's not needed). Her sats through the night as well as today have continued to struggle but seem to be making slow progress. She has been getting headaches but I think they may be due to all the nasty meds in her system and the lower O2 sats. I am keeping my fingers crossed that her heart is still holding steady. With all this stress on it, her heart rate has sure increased.

Eating and drinking have not been too successful around these parts for Kaidence. I really thought that she would be running around and ready for her first day of preschool on Tuesday but I am not sure that will work out. Today she told me that she just "wants to be normal again." Poor girl feels so icky but I LOVE the fact that she thinks her life is NORMAL....I find humor in that. We will take one day at a time and let her recover at her own speed. Thank you for your prayers. They have been felt.

Day after surgery...a little rough

2011-09-10T13:57:00.004-06:00

Sorry for not posting. I wasn't available for such things and K needed me. Her surgery yesterday took longer than expected but seemed to go smoothly. It was just very detailed. Dr. S found kaidence's severed nerve leading to the vocal cord and basically spliced it together with a new nerve. This will bulk up that left vocal cord. He isn't sure if the cord was severed during transplant or when they placed access lines in her neck. Either way, it was severed. He then went over to the right vocal chord. This nerve functions but not that well. It too has seen damage from the many breathing tubes she has needed. He decided to cut a square into her voice box and then plug a new nerve into the muscle in her voice box. This little nerve will start to sprout and grow new branches. This will help make that right side stronger.

They gained access by slicing into the front of her neck. She is very sore today and has really been struggling with the pain. This morning they pulled to drain in her neck. Her O2 sats have been a concern. She woke up last night panicked that she couldn't breathe and had been pushing the nurse button over and over but her bed was not plugged in. She NEVER uses the nurse button but was panicking. With the pain, swelling and congestion she is having a hard time coughing and moving all the extra secretions. Last night her sats kept dipping but it has been far worse today. I am thinking the swelling is a big reason for it. She was satting in the 70's but I was able to get her at 90% on 3 liters of O2. That was when she was sleeping. When awake, she still needs some, just not as much. We are doing some RT on her in hopes that this will help with her sats.

Her voice is VERY soft. She isn't talking much and the sign language she learned as a baby is paying off again. Hopefully within the next 24 hours things will start to turn around for her. It's not very often that something knocks this girl down.

Thank you for keeping Kaidence and her doctors in your thoughts and prayers.

In Surgery (Third times the charm)

2011-09-09T10:34:00.004-06:00

Kaidence went into surgery at 9am. She was so excited that she couldn't sleep last night. She couldn't wait to "go and see her friends" I asked who her friends were....IV team made the list. Not sure that they have many friends in this place. Abby... you made her list too!

Dr. Smith is doing the nerve on the left side and then will work on the nerves on the right side as well. He is hoping that the nerves on the right side will grow and branch out over time. This will help improve the function of the right vocal chord that is damaged. The left side is completely paralyzed, so he will connect the old nerve with the new nerve from her neck. It may take anywhere from 4-6 months to gain full function. We've waited this long, whats a few more months? The surgery should take a few hours. Its' a tedious one and they just informed me that they are starting the hard part..... whatever that means. The plan is to spend the night in post op.

I just got a call from the OR. Before the nurse told me how things were going she went on to tell me that the moment K went into the OR that they could tell that she was a very special little girl. She said that she was so happy and sweet. She has touched their hearts. She gave her bear bear a mask with gas, laid down and held her bear until she fell asleep. The nurse said they haven't seen a kid with a medical history like hers so happy to be here. She is truly unique.

I wanted to cry as she went to the OR because she was SO HAPPY. She kept turning around and waving at me. That sweet little girl hasn't stopped telling me that she loves me. After sending her into the OR I told Mike that once again I have no doubt that this is all part of Kaidence's earthly journey. Heavenly Father has given her every single thing that she will ever need to fulfill this journey of hers with a happy heart and a spirit that can penetrate the hearts of others.

I will keep you posted.

Improvement!

2011-08-22T20:55:00.002-06:00

I only have a second but today was another cardiology appt. Since it was also the first day of school Kaidence sported her new school clothes to cardio since she cannot go to school right now. Miss K has been praying every night that "my soldiers will get bigger and the my heart wont be in rejection." She then goes on to ask the "Dr. E and Dr. J will tell me that my heart is better when my mom calls them in the morning so that I can have my sleep over with Ry Ry."

Apparently, K's prayers are being heard. Today's echo showed some signs of improvement. The heart function on her left side is looking better. Her tricuspid valve is still a mess but still not our main concern. Overall the echo just looked better. They also did an ECG and the voltage on the looked much stronger as well. When Dr. E was shouting with joy when listening to Kaidence's heart today. The gallop in her heart rhythm was gone as last. These are all signs that the medications are working. Dr.E seems to think that we have a good handle on things. Also, Miss K's white count is holding stable. We will continue to plan on K's vocal chord surgery (3rd times the charm, right?) September 9th. We will be on house arrest at least until then.

We feel so grateful for the good news that we did get today. I don't ever expect things to be perfect but I do love things to be heading in the right direction......

Another Echo

2011-08-17T15:30:00.003-06:00

Here is a quick update as to the happenings of Kaidence. Yesterday cardiology called and asked if we could bring K in for another echo today. Dr. E was a little concerned about the gallop she heard at the last appt and wanted to make sure her heart was not getting sicker.

Today I hauled all four kids to cardiology.....enough said. K's echo still looks the same. At least it's not any worse. Dr. E said that she doesn't expect an improvement in her echo YET. It will take more time. Bummer part was to hear that she has a slight decrease in heart function on the left side. This is a first for this side of her heart. However, it could just be the rejection and it's not a big decrease. It's still functioning within normal range, just not as 'snappy' as it was. The gallop that was heard on Friday, has improved. It's still there but not as frequent. This and the decrease in HR at night is a good sign that we are heading in the right direction. If all continues to go well, we can treat this episode at home. If things don't clear up then we will go in for IV steroids. We will have an appt Monday and see how things are looking. Oh how I would love to hear that her echo shows signs of improvement. That would be WONDERFUL! It just seems like ever since last August...the road has been a little bumpy. Never getting back to where we were before the rejection. Not complaining at all, but I would love for that smooth sailing we had going on for awhile there. Loved it!

Kaidence otherwise is doing well. These steroids put the spunk in her. They make her crazy happy. Crazy like she is on something that she shouldn't be. She is bouncing off the walls, teasing her brothers, running around. She thinks everything is hilarious. She is somewhat of a handful. She will sure miss her brothers when they go back to school Monday. I think I'll be playing a lot of Barbie's.

We will keep you posted. Thank You for all you do for our family. We are grateful for YOU!

An Army of Soldiers!

2011-08-15T12:39:00.003-06:00

We have soldiers people! According to cardiology TOO MANY soldiers but that wont last too long. Kaidence's bone marrow really kicked into gear with those shots and we feel very reassured by that. We don't have the results from the virus' we are checking for but K does have some sores in her mouth. They are thinking this may all be linked to a virus and then the 2 big doses of IV steroids from the hospital stay. We will take it!

Onto the heart. We cannot wait any longer to start treating her rejection. Today Kaidence's heart beat has a gallop in it. This is an irregular sort of beat that can go hand in hand with rejection. A sign that maybe the rejection is now making itself more obvious. She did not have this on Friday. We feel extremely blessed in the timing of this today. White count up = we can now treat her heart for rejection. We feel so grateful that we don't have to wait a single day longer to start treating her heart. I was concerned that if things with the white count did not improve so quickly, her heart would get sicker and sicker and we would not be able to do a single thing about it. I feel great relief and peace.

Today we will start back on the steroids and other fun rejection meds. She will continue house arrest. House arrest for the boys has been lifted. They can go to a friends house (as long as everyone is healthy) but no friends over here unless they play outside. The boys will be happy to get OUT! We will do the steroid burst at home with oral steroids. Hopefully this will take care of it all. We are still keeping fingers crossed for blood results but are grateful for what we do know.

We will do labs and an echo on Friday. We will know more then.

This morning before we left, Mike gave Kaidence a blessing. I have felt such peace. I wasn't even sick to my tummy this morning. Thank You for your prayers. They have been felt immensely. They have brought peace to my mind, heart (and stomach). I have felt great comfort over the last few days. Therefore, I have not been placed in the 'funny farm'.....yet! Thank You, Thank You and Thank You. We are grateful to you for taking the time to pray for our Kaidence. They were heard and felt.

Our Weekend

2011-08-14T17:38:00.002-06:00

We have spent the weekend at home cleaning to keep Kaidence germ free for the next few days or however long. I have stayed busy trying to keep my mind free from wandering to the "what if" part of it all. Today I have been sewing some masks for Kaidence to wear to the hospital since she has outgrown all the old ones. I made these ones pink of course.

Kaidence is doing well and has not had any fevers. She has done great with her shots. All she asks for is a cute bandaid and a sucker. Her appetite today has not been so great, but that's ok. Her heart rate is a little higher than normal but we cannot do anything about that until we take care of her white count. Energy level is great and she seems happy.

I try to find a blessing in all things. Sometimes it may seem a bit of a stretch to come up with something and other times I realize that its been starring me in the face the whole time. I just hadn't looked for it. I have been trying to find blessings from all this the last few days. Here is what stands out to me.

* Kaidence's appt was moved up 2 weeks. If that had not happened we NEVER would have known that she had no white count/immune system. Therefore, she would have spent the weekend camping at Heart Camp and swimming with a bunch of other kids. She would have gone to church (germ fest) as well. She would also have been starting preschool. All along taking the extremely high chance that she would pick up on something that could possibly kill her. We wouldn't even have known that there was a problem until it was too late. This could have been life threatening to her.

By thinking this way it helps me remember that Heavenly Father continues to watch over Kaidence. He loves her and has not forgotten her. The prayers have been felt. I still get nervous when I start thinking too much about things but for the most part I have found great peace. I have tried not to dwell on the unknown and my mind is staying calmer than I thought it would. I know this is because of all the prayers. I have NO DOUBT!

Tomorrow will be a big day for labs. Likely we will only get the white count back tomorrow and not the others. Whats a few more days of worry? I hope that things will settle on their own. I am hoping that this is all from something that won't have adverse consequences for Kaidence in the future. That her heart will stay strong and calm until the white count is resolved so that we can treat the rejection safely.

Thank You again for all your love and prayers. We will see what tomorrow will bring. Hugs to you all!

A Bigger Problem!

2011-08-12T13:32:00.004-06:00

No heart camp tonight :(
Cardiology today was blahhhh! K has a little cold and ear infection still. Her echo still looks the same. Dr. E thinks that Kaidence is in mild rejection. Today a bigger problem presented itself. Kaidence's bone marrow has stopped making white cells. White Cells (AKA soldiers in our house) fight off the infections (Bad guys). Kaidence has ZERO soldiers. Why? We are not sure. Could be meds she is on, a handful of virus' or Post transplant Lymphoma. We are focusing on looking into meds or virus' being the issue. If that doesn't resolve the white count then we will move onto the Lymphoma part with the oncologist. I am trying not to cross that bridge unless I am forced to.

Today we removed her from the antibiotic for her ear infections & decreased her Prevacid. She has started shots that will hopefully stimulate her bone marrow into making white cells. Mike will give her shots daily. We will check back in with cardiology on Monday and run a lot of labs to check for those virus's and the other.

Back to the rejection. It would be far to unsafe to start treating it now without her bone marrow not producing white cells. So we wait for her count to come up and then treat the rejection. Its not ideal, but we have no other choice. The good news is that her heart and body are still handling things from the heart standpoint.

PLEASE stay away from us if you have been around anyone sick. Kaidence is in a very dangerous situation at the moment. She is not at the hospital only because she would be more likely to pick up on infection there than at home. She has nothing to fight any illness at the moment. So please help us out for the next little bit with that request. We have been told to keep the boys home as well until this resolves.

As always your prayers are felt and keep us going. Some days I feel like I am saying a constant prayer in my heart because that's when I feel the most peace. We would be so grateful if you would keep Kaidencce in your prayers. Our hearts all already forever grateful for all the many prayers said in our families behalf. Love to you all.

Now you know why I am so CRAZY!

2011-08-08T18:59:00.002-06:00

Really, I feel like I am going crazy. The ups and downs seem constant the last few months. We had the crazy radiologist a month or so ago sending us to the hospital in heart failure and it really wasn't anything (Don't get me wrong....SOOOO grateful) and then this last week at a routine clinic visit being told that she likely was in rejection and hospitalized, then no rejection (sent home and on vacation )and now they think it may be rejection after all. We did get to leave from the hospital and go on our scheduled vacation to Midway. That was wonderful but now after today's news my emotions are tired, no better way to put it.

Today I talked with cardiology and they are still concerned. Kaidence's main cardiologist was out of town when Kaidence was in the hospital and today was her first day back. After looking over all of Kaidence's info, labs, echo, heart cath......she is concerned. We have bumped up our cardiology appt from 2 weeks to this Friday. Pathology seems to think that the tissue from her heart looks suspicious for both vascular and cellular rejection cells. Not sure why this looks different from the main biopsy rejection test they did last week. I will ask more about that on Friday. She also seems concerned over her tricuspid valve leakage being worse. We are still awaiting the results of the test they did that checks for the number of different antibodies that fight against her heart. She may have none or she may have a bunch. This number may determine if they decide to start treating her.

CONS

1. Echo looks worse: slightly decreased heart function and right heart is bigger.
2. Low voltage on ECG (seen often with rejection)
3. Suspicious cells may be present according to pathologist.
4. Tricuspid valve is very leaky (sign of rejection or need of a new valve)
5. Seriously big neck veins (sign of rejection)

PROS

1. Kaidence looks GREAT!
2. Eating well, no upset stomach
3. Heart Cath pressures looked good
4. Has a lot of energy
5. Heart rate has been nice and low
6. BNP is down from February (lower is better)
7. Her parents love her, she has awesome brothers that have incredible Faith and she has many people praying for her!

So we will wait and see what cardiology decides to do. I should know more on Friday. Did I mention my anxiety level is on the rise?

Today we went and registered Kaidence for preschool. Something so normal that I wondered if this day would ever come. Oh how I hope she gets to go. She is so stinkin excited. We got all her school shopping done and she is already counting down the days. If she does need to be treated for rejection it will put a damper on that.

I will trust as I try so hard to do. Sometimes its harder than others. I am tired of the ups and downs. The roller coaster of emotions becomes a bit much at times. However, I will try to keep my chin up, count my blessings and keep moving forward. Today Paul Cardall posted this thought on FB and I LOVED it the moment I read it

We have no right to ask when sorrow comes, "Why did this happen to me?" unless we ask the same question for every moment of happiness that comes our way.

Enough said.....
With all sincerity in my heart I Thank You for your continued prayers........

No Rejection, Baffeled Doctors and Going Home

2011-08-05T15:07:00.002-06:00

*THIS POST IS FROM YESTERDAY. COULDN'T POST, BLOGGER WAS DOWN*

Well once again Kaidence has the doctors a little baffled as well as her parents. Despite the echo and EKG her heart biopsy looks good. Good enough that we are out of here. The dr's said they just aren't sure what to watch for on her. Heart rate seems the safest thing to watch. She just walks around with rejection symptoms and isn't necessarily in rejection. Her echo today still looked the same because that valve is worse but her heart and body seem to be handling it just fine. Cardiology will speak with the cardio surgeon and discuss at what point that heart valve will need replacing. Likely, that will not be for years. The good thing is that now cardio knows that if her echo looks this way that her pressure and body are handling it just fine. Sorta a new baseline.

Kaidence is a little grumpy from all the steroids they have given her thinking she was in rejection and from the drugs today but that's ok because we. are. outta. here.

Such relief, so much gratitude......Thank You for the prayers

Cath Lab.....and done.

2011-08-05T08:34:00.004-06:00

I woke up this morning with the hospital tummy......no more explanation needed.

Kaidence is in cath lab. She went in like she was going to a party. I will post the pics soon. She left on time and we are super excited to know that Dr. P is her drug doc this morning. He knows Miss K very well and I totally trust him. Dr. D is doing her heart cath today....So it should be a good one. We may not be making it for our out of town getaway to the Homestead in Midway. We were supposed to leave today at noon........oh well. Thats not imprtant.

***UDATE*** I didn't even get to finish the post and my pager went off. Kaidence is all done. Her numbers look good, we don't have the biopsy results yet and will not until this afternoon. Her pressures are good and so we count our blessings for what we do know and hold our breath for the rest. She is back in her room and already had a pink slushy and a thing of milk. Now she wants food but is still pretty loopy.

Sorry I wasn't a very good blogger today. Everything moved so darn fast that I didn't have time to really update. I will post again when I talk to cardiology. Thank You for remembering my Kaidence in your prayers.

Rejection...again?

2011-08-04T20:03:00.005-06:00

Seriously? Was it not a year ago to the date that Kaidence was admitted for rejection? Well yes it was and guess where we are tonight.....yep, and for the same thing. Next year our family will be skipping this week on our calendar.

Today was a normal clinic visit and she looks great, but her echo didn't. Her heart valve is leaking more, her EKG showed low voltage. Both signs of rejection. Her BNP is a little high but not as bad as last year.

The plan is to do another heart biopsy at 7:30 AM tomorrow. This will let us know if she has rejection, what types and how bad. We don't think it will be as bad as last year. I pray it is not, I keep recalling her suddenly being so sick, all the panic from the doctors and nurses and thinking I was losing her. I don't want to be told that I need to go and talk with my daughter by her bedside in a moment that they would normally kick a parent out of the room because she was so sick. However, I am forever grateful that they gave me that opportunity....just in case.

The other thing that this heart issue could be from is a her leaky tricuspid valve. Remember the valve that was damaged a few years back? Well, it's been getting worse and may need replacing sooner than later. We may know more info on that tomorrow as well. So for tonight we wait, prayand count our blessings. Tonight she is getting IV steroids and we will pray that tomorrow goes smoothly.

Thank You for all your love and prayers. If you need us we are in room 3084 at the house on the hill.

Good Night

2011-06-29T07:52:00.003-06:00

Wow, last night was a great night! The original plan was to go home after surgery but when Kaidence stared having naughty O2 sats the plan changed. They then talked about her spending the night in post op to be watched over. Well, post op decided that they didn't want to take her because she was requiring more O2 than they were comfortable with. She did sound pretty darn crappy after the surgery. There is NO WAY I would have taken her home. Therefore, she was admitted to the floor. We happen to be neighbors with our heart buddy Mason. It's much funner to be neighbors up here than down in the CICU like the olden days.

Last night she did great. She really sounds good now and has perked up. Her cousin RyRy came to see her and she was so excited. They sat in her fancy bed together, made funny faces, ate slushies and got their toe nails painted. Kaidence LOVED having the visit!

She slept great last night. She was not a fan of the high flow O2. I think her throat must be so sore. She did very well without the oxygen. This is so exciting to me!!! Maybe we WILL get off all that dang oxygen and I could get rid of all the equipment! So far, it looks promising.

This morning, She woke up and said "good morning mom." She ate a little breakfast but not much. She looks pretty wasted at the moment. Her eyes have dark circles under them and her face is a little swollen. She just needs a really good nap....I wouldn't mind one too.

Hopefully we will come home later today when her probe study is all done. Thanks for checking in!

DONE!!!

2011-06-28T15:29:00.013-06:00

DONE!!!!!! Two of the docs came out and gave report. Kaidence did great. We are still waiting to see her. GI's report was that she she does have irritation. They won't know the severity until we do the 24 hour study. The nasal tube was placed for that in the OR. It has a thing attached and I have to push different buttons every time she sits up, lays down, eats, stops eating etc. I may have a busy night! They will have biopsy results on Friday. Everything else with her stomach and intestine look good.

ENT Report- It turns out that the right vocal chord that we had always assumed to be the problem is not as bad as the left vocal chord. Kaidence's left vocal chord is paralyzed. This took place during her heart transplant. There is a nerve that goes around the heart and wraps around the Aorta. During transplant it was cut or damaged. Therefore, the vocal chord was paralyzed. He injected some plumping stuff into the vocal chord in hopes that it will bulk it up and give her voice some volume. It will also make her cough stronger to help protect her airway. This plumping stuff will wear off over time. If it works...we will do another procedure and thread a new nerve into the left vocal chord that is paralyzed. The right vocal chord has had some damage too it as well, but still is working....not perfectly, but working. He also took the extra tissue away from the left side of the airway.

Plan is to watch her for the next 24 hours. She will need some breathing treatments to help with the airway swelling. I am so glad they are not sending us home tonight. I would be a mess with worry. Mike just went back to see her. Here are some pics from earlier today. Thanks for your prayers. I will try to blog later but I may have my hands full.

Update #1- Halfway through surgery

2011-06-28T14:25:00.004-06:00

Just got an update. They have taken biopsy pieces of her esophagus. They are placing the ph probe. They have looked at her vocal chords and will be injecting them with some plumping stuff. This may help her voice, but will not fix it. If this works, a surgery may be possible in the future to permanently fix the problem. They still need to cut away the extra tissue in her airway. So far things are going well (knocking on wood). Her vitals are great and she seems to be doing well. Keep the prayers coming. Thank You all!

Ready Get Set and GO........

2011-06-28T11:41:00.002-06:00

UPDATE: Kaidence just went into surgery ( in her wagon). It will take about 3 hours. Please keep her and the doctors in your prayers......

Kaidence is so excited to be here today. She is spoiled rotten here and she knows it. All the hugs and kisses. She has her Mermaid nightgown ready for when she is all done with surgery. Also, I have nail polish for those little piggies of hers tonight. Might as well make it a 'girls night'. She will be staying the night. She is ready to get this done and she is starving. I already have a list of foods she wants to order after the surgery. Not sure she will feel like eating. We are forgoing the anxiety meds since they make her grumpy after surgery. She usually will walk herself to the OR without needing it. Her only request this time is a wagon ride. She already spotted one in the hall.

She was able to make a quick stop to the CICU to visit our friend Abby. I swear, those two girls look alike enough to be sisters. Abby is waiting for a new heart. Her blog link is on the right side of the blog under 'buddies at heart'. Her mom Michelle is amazing and I am so grateful that we were able to contact each other. It's been a blessing for me. Please pray for Kaidence friend Abby and her family.

Thanks for the prayers and fasting for Kaidence. I cannot imagine doing this without them. I will update when I hear anything!

Fast for Kaidence - Surgery Tuesday

2011-06-24T21:46:00.014-06:00

(why is blogger messing with my photos tonight? SORRY. Anyhow, Kaidence in her Mermaid nightgown with the crown she was given in cardiology. Just ignore the oxygen that is not doing her any good at the moment. Also, a pic of k at a hotel with her "Mermaid Baby")

I was hoping for a longer post but I only have a couple minutes. I just wanted to get this on her blog in time for the weekend.

As you may or may not know, Kaidence is having surgery Tuesday. It's in part the surgery on her vocal chords from last time but also to look further into what they found last time they scoped her. They will see what they can do with her vocal chords. Also, they will trim away the floppy tissue in her airway. This tissue is making it so they can't even see her vocal chords when scoped. Therefore, when they get in there and remove the tissue and that's when the decision will be made as to treatment for the chords. This floppy tissue could be the cause for her trouble eating, swallowing food, choking easily and her obstructive sleep apnea at night. How awesome would that be to get rid if all those issues?

Next up, this part is bothering me a little. Kaidence has no symptoms of acid reflux but because the findings a year ago we started her on Prevacid. Her esophagus was red and swollen. Well, after a year on her reflux meds it still looks just as bad. In fact, its pretty darn bad. We are not sure why. It could be something not great and we won't even discuss that yet. Or, it may be very treatable. We shall find out. They will biopsy pieces of her esophagus and send it to pathology, just to be safe. She will come home with a ph probe down her nose for 24 hours and then we will go back for it to be removed.

We should be able to go home later that day. We have been told that she may not have a voice for 3 weeks. But hey, Ariel was without a voice for awhile. Also, she may be pretty run down. One issue could be airway swelling. This scares me a bit!

It seems to get harder and harder to hand Miss K over for surgery. Before, it was life or death. Now she is so healthy and happy. However, this needs to be done for her own safety. I am scared but Kaidence is not. In fact, tonight she is counting down the nights until she gets to go back to her "hospital bedroom". She is counting on her Little Mermaid voice.....Oh, how I hope she gets it!

Once again we come back to all of you to ask your help. Our family is holding a special fast. We are asking that if any of you will be fasting on Sunday to please remember Kaidence, the surgeons and doctors in your fast. For those that will not be fasting, please pray for them. I have complete faith in the power of prayer. Your prayers are heard! Her surgery will take place sometime on Tuesday.

Kaidence is a strong little girl and I wish I had her strength. Thank you for all the prayers and fasting over the years. They have carried us when nothing else could.

I will update again Tuesday!

HOME..just busy!

2011-06-11T22:48:00.001-06:00

Holy Cow!!!!! I have not had a minute to post. We have been discharged. They have K on some stronger antibiotics for a bacterial infection in her lungs. This bacteria may have been festering for awhile and they seem to think that is what may have been causing problems (migraines, cough, vomiting, fevers) for the last couple of months. Its not a common bacteria to see, so it was likely missed/passed off for pneumonia. Therefore, with ALL the antibiotics she has been and nothing has touched it and she has never gotten better.

So far, she has done very well since being on the new antibiotic. Now her heart rate and O2 at night is better than it has been in a long time. No more naps and all she wants to do is run and play. She spent the day in her swimming suit, although no swimming took place. Also her appetite is making a comeback. It has taken a hit lately.

I am so grateful that our stay was short and simple. Grateful that it was NOT what was originally diagnosed from the doctor who read her chest xrays (we will not be going back). We feel so humbled and blessed. All it takes is a few seconds for your world to take on a drastic change for the good or the bad. Needless to say, after what we were told on Wednesday......We feel blessed! Thank you for your love and prayers. We have some friends up at the hospital that could really use your prayers. Their names are Carter and Megan, they would be grateful for your faith and prayers....

From One Hotel to "The Other"

2011-06-08T22:37:00.005-06:00

Finally, my baby girl is sleeping. Kaidence has been sick for about 1 1/2 weeks. It would almost seem off and on with a constant cough. She has been napping everyday and that is so NOT Kaidence. She also has been getting some pretty severe headaches since her rejection last August. They come on so sudden and cause her to vomit. They really do a number on her.

The last couple of days her cough has gotten worse. She has slept non stop and been super grumpy. I can't recall a time that she has slept like this (without drugs inducing it). She has also been super grumpy and that is not a Kaidence thing. With the cough, she has had a hard time moving the junk up and out. She has had a couple of blues spells from this. Her heart rate has been a HUGE concern for me. 152-154 SLEEPING! That is NOT a good thing and could be a sign of that darn R word.

I have been in touch with cardiology over the last week and she has also seen her pediatrician twice. It was yesterdays appt that got the ball rolling. Kaidence looked much worse than she had the two days before. Also, she had a chest xray done at the hospital by our house. It revealed a possible pneumonia in the upper right lobe. The main concern was the fluid in her lungs most likely caused from her heart. This is where I freaked out a little...or a lot! I think I cried the whole way to the hospital. The thought of her heart being in rejection again, just broke mine.

We were admitted by cardiology so we didn't have to spend hours going through the ER. Her echo for the most part looks good. Her valve is pretty leaky and that may be contributing to the fluid in her lungs. Her xray from here showed that stuff had cleared from her lungs from the xray earlier but she still had fluid in them (if the makes any sense?) They think that she may have had a mucous plug blocking her lung and trapping the junk in and then when that plug dislodged her lungs cleared a bit. If the fluid continues, we will start her on some lasiks.

MORNING UPDATE:
Kaidence had a good night and looked a little too good to be a sick kid at the hospital. We all know better than to think she is as good as she looks. This morning she looks pretty tired. Her coloring isn't as good as last night, she is coughing more and she does not want to eat. Also, the urine output is not so great. Last night she wanted to go walk around the hospital pushing her IV pole (ya, makes her feel cool. Like she is a big kid.) Today she walked to the potty in her room and needed to go lay down. Respiratory Therapy has started doing some treatments on her every 3 hours. So far, we are waiting on labs prograf and CBC.
It does not look like pneumonia at this moment but possibly some sort of bacterial infection that needs to be treated with a different antibiotic than those used to treat her last pneumonia and sinus infection. Kaidence does have a surgery scheduled for the end of the month to do some work on her vocal chords and her airway. Hoping that things will improve so that we can get that taken care of.

I will keep you posted. Thank You for your thoughts and prayers!

Happy 4th Birthday Kaidence (& an update)

2011-02-23T07:59:00.009-07:00

(Kaidence at Hopekids Princess Party last spring. Of course she had to wear her crown)

Happy 4th Birthday to my Miss Kaidence! I cannot believe you are 4 years old. I think back to that beautiful snowy morning that you were born. It was so peaceful and still. It was so quiet outside that you could here the snowflakes fall. It has always stood out in my mind. Now I can joke that it was the calm before the storm. I am grateful that I was given the calm that morning. It almost like your Heavenly Father was bringing you down himself to me. It was beautiful as were you. You had VERY DARK long curly hair. So pretty. Now your hair is long and blond. When you got sick your curls went away but they are starting to come back. Maybe that's why you have so many snarls in your hair.

Looking back to when you were sick I never looked this far ahead. It was minute by minute. Of course I had hopes and dreams for you but I was too scared to dwell on them. I needed to protect my heart. We celebrated your month birthdays knowing that you may likely never see your 1st Birthday. Your Angel Heart came to you and here you are today. How blessed we have been to know such wonderful people. The gift they gave, they gave to all who know you. We love them with all that we are.

You are getting to be such a big girl. Okay, not weight wise. You weigh about 32 lbs. You keep your pink doctor kit, hospital badge they gave you and your purse with princess cell phone packed by your bed. You told me it was there for when you grow up and that you want to be a doctor and help sick kids. You then asked if I thought it was a good idea...of course I do. You'd be a GREAT doctor. You love riding your bike, in fact you are getting a new princess bike for your Birthday tonight. You will be SO excited. You love going to the cabin. Yesterday you packed your suitcase for the cabin trip in JULY! You make me laugh. This September we will try Preschool again. You were so sad when your heart got sick last year and you couldn't go to Preschool but I have loved having to myself a little bit longer. This summer you became a big sister. You love your little brother and take such great care of him. He has been a blessing to all of us! This Fall you get to go to DisneyWorld! It was a gift for your dads graduation from Nana and Papa and you cant wait (neither can I.)

Your persistence and love for life Carry me along. This summer when you got sick, I was worried you wouldn't make it to Birthday #4. It re-instilled many things in my heart. Mommy's are supposed to be the teachers in life and the kids the ones learning the lessons. For me it has been the other way around. You have been my greatest teacher and I have learned lessons that I am afraid could not be taught any other way. Kaidence, I love you with all my heart.

Happy Birthday Sweet Girl!

***UPDATE*****

Ok, So I am terrible at blogging. Same old stuff around here. Christmas was wonderful and we have all been healthy through the winter until February. From then on, its been a joke. Carden has had RSV and that has been a stinker to get over...he's still not over it. Kaidence has been sick off and on. More on than off this month. Therefore we have funky drug levels in her blood that make her get terrible headaches and a sick tummy. As of now, she sounds awful. She was up last night with a fever and cough. However, she was so excited for her Birthday. She woke up around 10 and her door was already decorated for the big day. We watched Strawberry Shortcake until really late and her fever broke. She has so much energy this morning...me not so much. She cannot wait for her party tonight. I can tell that she is still not feeling great. Ok, its really not a party because everyone is sick. She never gets much of a party this time of year SO we decided to do one for her this summer. A half birthday party. Summers just a better time to party for an immunosuppressed kiddo. She deserves a real party too.

Mike walked for graduation 2 weeks ago and that was great. McCaden took 2nd place at the Pinewood Derby (We were literally blow drying his car just before walking out the door). We were shocked by the win to say the least. The other day McCaden was watching the news and was totally disgusted when he heard that two "serial robbers" had robbed a place. He turned to me and said "that is just so stupid. Why would two people rob someone and still a bunch of 'cereal?' Ha, Ha, I couldn't stop laughing. Carden is slowly growing. He is 13lbs and eats like a little piggie. Not sure where all that food goes. He loves his Jumperoo. Camden is still girl crazy. How he loves the ladies. He is excited to try his hand at Baseball this year. He is also a smart little stinker at school.

I think that wraps it up for us. Thanks for checking in!

Our Gift of a Miracle, 3 years later!

2010-12-22T20:54:00.011-07:00

My Dearest Kaidence,

3 years ago you were sick in a way that mommy and daddy could not kiss and make better. No band aids or medicine could fix your heart. Mommy and daddy tried so hard. As much as we wanted 'your' heart to get better, it just wasn't part of Heavenly Fathers plan for you. Your spirit was strong, patient and graceful as you waited, but your body was tired. I am sure you already understand much more of this than I realize. I have no doubt that in some areas, you are wise beyond your years.
Today marks 3 years from when you were given a second chance to be a little girl. You were given this gift by an amazing family who's hearts had been broken. They did not know you, but they wanted to save the life of another. Sweet girl, they saved your life. I cannot think of a more Christ like act than that. It truly is a miracle that people are so willing to do such a selfless thing. I still cannot talk about it without crying.

Kaidence, your life has a great purpose. Many have prayed for you and I have NO doubt that those prayers were heard. Prayers are not always answered in the way we think they should be, but they will be answered in the Lords way.

My sweet little girl. You are so brave. I know you realize that you have to do hard things. Things that most other little girls, your cousins, friends and your brothers don't have to do. You don't cry about it, you just do it and make the best out of it. You seem to understand that it just part of your life and you do it with grace. You not only amaze your mommy, but those that care for you. Just know that you don't always have to be brave, its ok. I will love you no matter what. I still get scared.

Kaidence, may you always live your life with the spunk and happiness that you do now. May you strive to make the most out of the miracle that you have been blessed with. I hope that joy, faith and gratitude will always fill your heart.

I am proud to be your mommy!

Love You Forever,
Mommy

Update and Wishing you a Happy Thanksgiving!!!

2010-11-20T12:08:00.003-07:00

The weather is freezing outside and a big winter storm should be rolling in any minute now. Is my yard ready, are the leaves raked, is the tramp down and the playhouse boarded up???? That would be a BIG FAT NOOOOO! Oh well, at least our Christmas is all up and the shopping pretty much all done! I am just going to cozy down for the day.

Things around here are going well. The boys are doing well in school and their teachers had great things to say about them. We have started a new job system that seems to be working so well, we are on week 4 of success. Its amazing how much more time I have when they do their part in the family. It may not be done to perfection, but its not about that. Kaidence is doing awesome at her job of making her bed and picking up her room.

Kaidence is doing great. She loves being back in primary. Her part for the primary program was "Jesus organized the church." Also, she is giving a talk in primary tomorrow (guess I should be working on that and not the blog). Her next cardiology appointment is the first week of December. This week she is having another lovely sleep study. We are hoping that having the vocal chords healed will help with her sleep apnea problems. We are keeping our fingers crossed that she does well and then we could get rid of the O2 concentrator, air compressor and vent heater. Yeah!!!!! I am sure that will have some affect on our power bill. Next month on the 23rd will be Kaidence's 3 year heart birthday. Wow! We have been incredibly blessed over the years.

Carden has not been the happiest camper the last 2 weeks. Such a gassy tummy. That kid is ready for scout camp, he would be a hit with the boys. I have pulled every possible thing out of my diet to try to make this kid happy. Turns out that I think he is starving. He doesn't cry after I get done feeding him, but he just doesn't seem content long. So I am starting to have to supplement with some formula. This will be good because he is no longer on the growth charts. He is weighing in at 7lbs 5 oz at 8 weeks old. So he has gained about 2 lbs since coming home. Hopefully this will help fatten him up. Since supplementing, he is SO much happier. Hopefully this will be a step in the right direction.

On the 14th of November, Carden DeMont was given a name and a blessing by Mike. The name DeMont comes from my grandpa. He is a man of integrity and great faith. My grandpa stood in the circle during the blessing on what happened to be his 94th Birthday. I am so grateful for the many things that my grandpa taught me in life. His incredible Faith and trust in our Father in Heaven stand out the most to me. This example has blessed me in my life and in dealing with my trials.

We hope that everyone has a wonderful Thanksgiving. Be grateful for the many little things in life. We are thankful for many of you for the countless hours of service that you have given and for the many prayers that you have given for our little Kaidence. This journey would be totally different without you. We are grateful to our Father in Heaven who knows each one of us. He has carried me in days that I felt I could no longer keep going. He knows my needs, He knows my heartache and He knows my joy. He has a plan for each of us. Sometimes the plan is hard to understand and heartbreaking to watch and endure. However, we each have our own journey and He will provide a way for us to accomplish that journey.

Our hearts are full of gratitude for the family that gave to us, so that our kaidence could continue her journey on this earth. Not a single day goes by that my heart does not break for you, but at the same time my heart is so full of gratitude. I am amazed by what yo have given to us. We are so thankful that you are a part of our lives. You are such an incredible part of Kaidence's journey. Because of you her journey continues. We love you and pray that peace may be given to you always, especially in the coming weeks.

Annual Heart Cath Results October 2010

2010-11-02T21:20:00.005-06:00

Yesterday went well with Kaidence's heart cath. The cath lab was running a couple of hours behind because of some sick kiddos. We totally understood because I know for a fact that we have bumped others a time or two as well. Just grateful that we weren't the ones needing to be 'fit in'. That's never a good sign. Kaidence did fine with it and only asked for something to drink twice. When it did come time for her cath she knew exactly what she wanted and how she wanted it. She literally danced her way into the cath lab. She danced and did princess twirls until she was standing next to the surgical table. She then asked someone to lift her onto it. She had already told the anesthesiologist that she wanted an IV in her foot, a root beer flavored mask (for the sleepy gas) and that she wanted "bear bear" to have a mask as well. She then proceeded to ask for a PINK oxygen mask, she had to settle for a yellow one. Thankfully she used her big girl manners when requesting it all. She was very polite. Once she was sitting on the table the anesthesiologist handed her the root bear flavored O2 mask. She said "hold on, I need to lay down first". Once she layed herself down, she took the mask and held it to her face until she was to loopy to do so on her own.

Recovery went well and she ate like a horse after. Seriously.......she ate and ate!

Her results came back today. Her pressures are looking a little better. Her AMR is still 'suspicious' but the other areas came back with pretty good grades. We are also waiting for the results of her specific antibody test, those should be back next week. Although we are not where we were before the rejection episode in August, Dr. E seems pleased with the direction we are going. The truth is that things may never get back to how her heart was. However, rejection is something that we want to completely resolve. Its just taking a little more time. With Dr. E feeling that Kaidence is progressing we will discontinue the IVIG (YEAH!!!!!!!!). I am not a big fan of IVIG and the whole process, but glad we have it just in case. Hoping that we NEVER need it again. No IVIG means that tonight she was able to get her flu shot (so happy). We will continue her steroids for one more month and hopefully decrease her prograf range to where it was before she became sick in August. Also we were able to stop her Lasiks (water pill). This means no more accidents while standing in front of the potty. Poor girl would get so upset when she couldn't make it fast enough. That basically sums up the day.

I am grateful that we are making progress, even if its slow. Its such a blessing to be heading in the 'right' direction. Thank you for all the many prayers.

Also, Carden gave me a wonderful birthday gift.......sleeping through the night for the last 3 nights. I must add that I am VERY grateful for that as well.

A FRIENDLY REQUEST
So here is our friendly request to our dear friends, neighbors and family. PLEASE, lets us know if you or your kiddos have been sick and will be having contact with Kaidence. That way we can make a decision on whether we need to change our plans and stay home.
If you have spent time with her recently and end up getting sick, let us know as well. We understand that you may feel well one day and sick the next. This is in no way to make someone feel bad, but it helps give us an idea of what it could be if she does end up sick. For a regular kiddo, no biggie. But for Kaidence this will save her multiple blood draws (and tears) as they run labs to figure out what type of illness she has. So think of it as doing Kaidence a favor and Please just give us a heads up.
Also, if you happened to get the FLU MIST and will be in contact with Kaidence please let us know so we can stay away for a couple weeks. We have received a letter from cardiology stating that because the Flu Mist is a LIVE vaccine it could be contagious to Kaidence. Therefore, we are to stay away from those that have received the mist and ask those that will be in contact with her to get the SHOT instead.
Thanks for always being so so good about all of this. We hate asking this of others but we know of the major impact this could have on Kaidence's health and in all honesty her life.

Cath Time Again

2010-10-31T22:51:00.004-06:00

Well, its that time of year again. Tomorrow Kaidence will have another heart cath. They will be checking the pressures in her heart and also taking some biopsy pieces to check for rejection. She is excited to go, crazy girl. I wish her mommy and daddy were that excited. I was feeling really confident about her progress until a couple of days ago. Hopefully it is nothing more than nerves getting the best of me. Just very worried this go around as to what they will find and her pressures. This stuff never gets easier.

I will post about our latest doings when I have some time. I just wanted to let everyone know about tomorrow. If you are willing, we would appreciate the prayers for Kaidence and her docs tomorrow. I will post when we know results.

A FRIENDLY REQUEST

2010-10-14T14:13:00.004-06:00

Yesterday was Carden's due date, but instead he turned 3 weeks old. How time flies (unless its 3AM). For Carden's 2 week appointment he weighed in at a whopping 6lbs even. The kids love their little brother (Still) and Kaidence continues to assist in all diaper changes. The days and nights thing is slowly sorting itself out. The first night I used the "Snuggle Me" that a friend had given me (Thanks Becky) was our best sleep ever. He sleeps so well in it. We use it now every night. If its dirty, washing it is my first priority for the day. Its awesome! How did I survive 3 other children without it?

Today Kaidence and Mike are spending the day up at PCMC for another IVIG treatment. This time they will infuse her over 12 hours instead of the 5 hours in hopes that it will prevent another reaction like last time. Its hard for me to be on the other end of things.....at home.....waiting. However, I don't want to take Carden around all those germs. Kaidence was excited to go as usual. She woke up this morning our conversation went like this:

K: "Mom, I get to go to the hospital today?
Me: "Yes, you get to go today.
K: "Ohhhhh, THANK you mom"

Ok, I thought. I hope she doesn't grow up to be a hypochondriac. By the time she left this morning she had her menu planned for lunch, Chicken Nuggets, baby french fries (AKA hashbrowns) and of course Ketchup.

This Sunday Kaidence gets to go back to primary (the one at church). However, we were told that if anyone has a runny noses to pull her out of class. Ummmmm, at that rate she may never get to go to primary.

A FRIENDLY REQUEST
So here is our friendly request to our dear friends, neighbors and family. PLEASE, lets us know if you or your kiddos have been sick and will be having contact with Kaidence. That way we can make a decision on wether we need to change our plans and stay home.
If you have spent time with her recently and end up getting sick, let us know as well. We understand that you may feel well one day and sick the next. This is in no way to make someone feel bad, but it helps give us an idea of what it could be if she does end up sick. For a regular kiddo, no biggie. But for Kaidence this will save her multiple blood draws (and tears) as they run labs to figure out what type of illness she has. So think of it as doing Kaidence a favor and Please just give us a heads up.
Also, if you happened to get the FLU MIST and will be in contact with Kaidence please let us know so we can stay away for a couple weeks. We have received a letter from cardiology stating that because the Flu Mist is a LIVE vaccine it could be contagious to Kaidence. Therefore, we are to stay away from those that have received the mist and ask those that will be in contact with her to get the SHOT instead.
Thanks for always being so so good about all of this. We hate asking this of others but we know of the major impact this could have on Kaidence's health and in all honesty her life.

That's about it for this end of things. Hope that everyone is doing well and enjoying to cooler weather and beautiful colors of fall.

Life with a New Baby

2010-10-04T13:28:00.000-06:00

(Blogger wont let me post pics)
OK, I have 35 minutes till conference starts again to post. Here we go..........
We brought Carden home from the hospital on Friday. He needed to spend some extra time at the hospital being watched because of his low blood sugars. He also had jaundice. I had to laugh a little because they sent in a social worker to speak with me about bringing him home on a Billibed to treat the jaundice. I assured her that I was not going to be traumatized by this and that I could handle it. A billibed was the least of my worries. All my boys have needed one.
Just made me chuckle.

Carden is such a tiny sweetheart. I cannot believe how small he is. His lower arm is as round as my thumb. He is still a great eater. We brought him home just a little over 5 pounds and I am sure that he is gaining. He still doesn’t fit in his newborn clothes. He has his days and nights a little confused. In fact from midnight to 4 AM he doesn’t think that sleep is needed. He doesn’t sit and cry, he just wants to be awake and nurse. He is extremely loved by his brothers and his sister. Kaidence loves to help change his diapers.

Life here keeps moving forward. Thursday Miss K had a cardiology appointment. All still looks the same for her. I have noticed that her heart rate has dropped these past 2 weeks and that makes me feel a little more confident. She was excited to show off he brother. Kaidence's cardiologist looked at Carden and said that she thought he should have an echo. My stomach sank, I was sick. Sometimes it’s easier to just not know. Ignorance is bliss at times. However, I knew that we should do it. Instead of making me wait for weeks and worry they did it that day. He slept through the whole thing and everything with this little guy’s heart looks great. How grateful I am. I cannot help but look at him in amazement. How the Lord knows what our hearts need. I guess McCaden was right. When Kaidence was sick, he prayed for the little brother that would be in mom’s tummy. At that moment in time, everything with K was falling apart. I was sure that Mike and I were DONE having kids. I could not take the chance of more heartbreak. We explained to McCaden that there was NOT a baby in my tummy. He said “I know, but there will be.....a baby boy". I guess that the Lord gave him a glimpse of what was to come. Just as it is with all of our children, we could not imagine our lives without Baby Carden.

Introducing our New Little One.

2010-09-21T18:14:00.005-06:00

Welcome to the world Carden DeMont. Weighing in at 5lbs 15oz and a length of 19in. He joined the ranks at 3:3oPM this afternoon. McCaden, Camden, and Kaidence are super excited to have a new baby brother. He has already brought the mother instinct out in our little Kaidence. She insisted everyone use "hanitizer" before touching her brother. Camden wants to hold Carden constantly, McCaden won't let him go, and Kaidence bosses everyone around. It's great.

Things were a little scary for a while. During a routine NST this morning for Shauntelle they found that her fluids were very low. Along with the low fluid the baby's heart rate was low. Low enough they admitted Shauntelle to the hospital and were talking C-Section. They determined that the cord was wrapped around our little ones neck. When Shauntelle would have a contraction it would constrict the cord causing his levels to drop. They watched things for a while then decided that it was safe enough to induce her and watch closely and have the C-Section ready to go if needed. About an hour after they broke Telle's water she went from a 6 to a 10 in under 10 minutes. 6 pushes later and we had our little boy. A crazy morning with tons of stress and now everything feels great. Our little bald Carden is such a sweet addition to our little family.

*Update 9/23/2010*

We are stuck at the hospital a little longer than we wanted. Carden has low blood sugars because he is so tiny. As of yesterday he was 5lbs 8 oz. Such a cute little stinker. He is also being treated for jaundice. He is a GREAT nurser (finally I have a kid that will do it). The docs are surprised at how well he does at eating for his size. So our main concern for him is to get those blood sugar levels up so that he stays out of the NICU. He is so fun to have around. He is very loved by his brothers, sister and parents. We feel so very blessed to have him in our family.

Long Night

2010-09-19T19:03:00.002-06:00

Thank You SO much for those that have fasted and prayed for Kaidence today. I had what I call a "Hospital Sunday." Those are Sundays when you feel extremely humbled and the spirit feels so strong..... Regardless of last night serious lack of sleep.

Kaidence's night last night was awful, to say the least. Her headache was severe, nausea and vomiting was literally every 5 minutes. We could night keep any pain reliever in her, within 2 minutes of giving it, it came back up from about 7pm -3 AM. Then the body aches kicked in.

Last night was spent catching throw up, trying to keep her from throwing up, 2 am store run, body aches, ice packs for her head, worry about fast heart rate, trying to find a magic way to run her feeds so she would keep them down, debating on a trip to the ER, sleeping on the floor and so on. The poor little girl would nicely ask each time for her throw up bowl. Around 2:30 Mike gave Kaidence a blessing while I held her in my arms. Before it was over, she was asleep. At that time we decided to give her 30 minutes to try to keep down feeds, if not we were heading to the ER. This is too much with her recent rejection episode. She didn't throw up the rest of the night.

Today she seemed to do ok. She laid around more then usual but seemed ok. Tonight she is getting a fever and her nausea seems to be making a come back. I hope that we can at least keep it in control tonight. She is tired and so are Mike and I.

Once again Thanks to everyone. Last night I found much peace as well knowing that today she was being fasted for. I will keep everyone posted and hopefully this will subside in the next day or two. Love to you all!

We are Fasting for Kaidence Tomorrow

2010-09-18T19:42:00.005-06:00

I meant to blog earlier about this, but this week has been AHHHHHHHHHH! However, as of today Super Saturday is DONE!!! Thanks everyone for your help.

Tomorrow we will be having a fast for Kaidence for anyone that would like to join in. I have felt strongly that we needed to do so, but have put it off because I feel guilty asking....yet again. However, I know its power. I don't know exactly why, I just keep getting this feeling that we need to do it. So we will. We do what we can, and the Lord will do the rest according to His will.

Kaidence had her IVIG treatment on Thursday. The treatment itself went well, however this evening she seems to be having some reactions to it. I walked in the door exhausted from today, only to find a sick little Kaidence. She laid on the floor crying (NOT a typical Kaidence thing to do.) She has a terrible headache and started vomiting. Because of the recent rejection I called cardiology. They said its a reaction to the IVIG treatment, they have seen another child react the same way. The headache may become very severe very quickly so we will be giving medication for that around the clock for the next 36-48 hours regardless of symptoms. If the headache cannot be controlled and fluids or meds cannot stay down then she will need to be admitted to the hospital tonight. I am praying that we can all stay home tonight. I am wiped out!

Back to Thursday. Kaidence's heart function looked good again on the echo. However, still nothing has changed in regards to the hearts size and the leaking heart valves. Due to the fact that nothing has improved in the last month, her cardiologist is not sure that it will ever improve any further. This could cause issues down the road, but we will cross that bridge if and when we need to. Hoping that we never need to cross it.

Other than that, Kaidence is doing well. Once her "soldiers" get stronger she wants to go to primary at church and ride the TRAX train. Those are her only 2 request.

The boys seem to like school. McCaden is still full of ALL the energy in the world. He is a good help and is testing his sense of humor out on everyone. Camden turned 6 on Friday and was so excited to bring treats to his class. He is my little sweetheart. He has the cutest grin, he can never get away telling a lie because his face always gives it away with that darn grin of his. He is a great listener, usually only have to tell him once or not at all. He could talk the ear off of anything (like his mommy). Happy Birthday my sweet little man! Mommy Loves you FOREVER!

Thank you all for all of your love, prayers and understanding.

Tomorrow's IVIG Treatment

2010-09-15T19:56:00.003-06:00

Tomorrow we will head up to PCMC for Kaidence's IVIG treatment. It will make for a very long day, but we will be prepared for ways to stay busy. She will also have her regular clinic visit. I am hoping that they can still do it. It seems that she has caught Camden's cough and icky nose from last week. Please pray that this treatment will go smoothly and do what it needs to do for Kaidence's heart.

Baby and Cardiology Update

2010-09-07T20:43:00.003-06:00

Once again, I meant to post much sooner. Life has been CRAZY! My time seems to barely allow me to do the things I HAVE to do, no time for extras. Blogging is an extra. Between Kaidence and myself we have doctor appointments 3-4 days a week. To tell you the truth, I have had to take some time to deal with my emotions and fears with regards to Kaidence's future. In fact, it took me crying myself to sleep a couple of nights. However, all I can do is my best to care for her, love her and teach her life's lessons.....the rest is out of my hands. What is meant to be, will be. Sometimes that is so hard to deal with and at other times it comes as such a relief.

A quick pregnancy update. I have Non Stress Test 2 times a week for the baby. Fluids have been up and down. However, more time spent being down. Last week I had my last progesterone shot, so we will see what my contractions do. I will be 35 weeks and have made it past the time I delivered McCaden. Hopefully, I can make it at least 2 more weeks. The kids are getting excited, especially Kaidence. So that is the baby update......now for the Miss Kaidence update!

As far as her heart goes, things are still the same. I am a little frustrated that her heart is not recovering quicker. It really hasn't made any improvement since coming home, but it hasn't gotten worse either. I am worried that her heart rate is still high, the vessels in her neck come and go. Her heart is still big and therefore her valves are still leaking. However, her heart is functioning (squeezing) well and so that is a great BLESSING. Cardiology wants to keep Kaidence on her steroids and heavy drug doses longer than originally planned, because her pressures in her heart are so high due to the rejection. It looks like she may be on these for the next couple of months. Longer than originally thought. They are also starting her IVIG treatments next week in hopes that things will start to move along with regards to recovery and treating the antibodies and rejection mor aggressively. So because of these treatments Kaidence is no longer able to get her flu vaccine for this year (scary) and she is very immunosuppressed. We will just have to stay home, keep germs away and hope for the best. Please be understanding if I get a little more freakish about sickies as flu season approaches. Just remember that a virus is what started it all and is the reason she needed a new heart to begin with. So yes, it scares me.

Kaidence is flying high on her steroids. I know most others have the opposite problem with grumpy kiddos on the roids. Kaidence seems to be very hyper on them. As usual they make her hungry and I think she has gained about 3 pounds since being home. Her face is very round and she has a cute little double chin. She seems to think she is the luckiest girl in the world. She is so upbeat and full of herself. She talks non stop and has the funniest little giggle. She misses going to primary on Sundays. I think that is when she is reminded most that her heart needs to get better. She understands the whole germ thing. She has spent time outside painting with her brothers (she loves art stuff right now). She has also spent time in her playhouse. I feel bad because the neighbor kids usually play in it with her, but for now its just for her and her brothers. She also loves to go out and ride her bike. This girl just goes and goes. When I nap, she lays in bed next to me and watches movies. She will spontaneously grab my hand and kiss it or lean forward and kiss me on the cheek while I sleep. She doesn't know that I know she is doing it, she thinks I am still sleeping. Its those moments that I just savor the sweet tender spirit and personality of this little girl.

I am grateful that she IS so happy, crazy and full of life. She is such a sweetheart.

Our hope is that Kaidence can continue to stay healthy and that her heart may start to heal and recover if that is what is meant for Kaidence.

Todays Biopsy Results

2010-08-20T18:59:00.002-06:00

I hope this post makes sense, because I have an awful migraine and am sick to my tummy. I wanted to update K's blog though.

We got to the hospital at 6AM, she was first case in the cath this morning. I walked her in, sat with her as I held the gas to her face and she held the gas to 'bear bears' face. Before, I knew it she was snoozing. No tears, no fear it went smoothly.

After her cath we met with the doctor that did it. He seemed concerned because Kaidence's pressures in her heart were higher than last Fridays. He worried that her heart could possibly be getting sicker. Hearing this news just made me want to scream and cry. Ok, I did cry. Things with his pregnancy are getting a little worrisome in regards to early labor and the last thing I need is another sick kid in the hospital. The thoughts of being back at the hospital and missing the 3rd straight first day of school........aghhhhhh! He wanted to wait and speak with her cardiologist and see what she thought.

Kaidence came out of the anaesthesia beautifully. We have found this new cocktail that works great for her. She woke up today, looked at me and within 10 seconds smiled and asked for her chocolate milk I had promised. She was happy and that was nice to not fight the tears that come after.

Around 12 noon we went down to meet with her cardiologist and for K to get her echo. I have been told the echo looked the same as last time. Dr E felt that Kaidence looked too good to have pressure that bad. She is not sure what happened in the cath but feels hopeful that we are still heading in the right direction. Kaidence's BNP (heart failure number) has significantly dropped, but still has a little ways to go. She reminded me that this could all take months to repair. We will watch her closely and call if we have any concerns. What a BLESSING!

Kaidence was not thrilled with the idea of heading home. She kept asking when she could go to her room. finally we told her she could have chili's Baked Potato soup and she left the hospital premises willingly.

I guess I should add that her biopsy results were just called into us. It is still the same as last time "suspicious". We know that Kaidence is holding her own with all the meds and that the antibodies are behaving currently. Hopefully things will continue to mend and that her heart can eventually make a full recovery.

It sounds so redundant, but Thanks so much for the many prayers that have been said for Kaidence and our family. Today, they sustained me and kept me from losing my mind.

Heart Cath this Morning

2010-08-20T05:24:00.002-06:00

Heart Cath and heart biopsy first thing this morning to check for rejection. May not have laptop to update until later. Please keep her in your prayers today.

An update from HOME!

2010-08-18T16:42:00.002-06:00

So obviously my adrenaline hit the floor and I have been exhausted. Sorry for no post. Kaidence came home from the hospital Sunday afternoon after playing the "we are out of some of her medications" game with the pharmacy. Needless to say, she is back on a lot of medications. We spent that night labeling syringes and drawing up meds.

Kaidence is doing well. As they removed her IV Sunday morning, she finally decided that she wanted to go home. She was excited to see her doggy and her brothers. Camden even let her wear his Sponge Bob Pj's to bed that night. They were huge on her, but she was thrilled. Kaidence is having a hard time understanding why she cant go to church on Sundays or go play at the neighbors like her brothers. She cant go anywhere because of her lack of immune system . That puts a few kinks in things, but we are SO GRATEFUL to have her home.

Kaidence is eating well and those little steroid cheeks are making a come back. She is very active. Her heart rate is still increased but the doc said that her heart is still large and that it will take time for that to heal. Friday morning Kaidence will have another heart cath to check for rejection. I pray that these meds are keeping it under control and that she can stay out of the hospital.

My pregnancy is starting to give me some problems and my NST's for the baby have been moved from once a week to twice. My fluid is getting lower and I am supposed to lay around, take it easy and drink a lot. Not that possible with Dr appointments 3-4 days a week, soccer and kiddos starting school (cant we have FULL DAY KINDERGARTEN)? Seriously, its ridiculous, especially on early out Friday. Just my opinion though. Anyhow, Camden is excited and so that is what counts.

So basically things are fine, just crazy like everybody else's life. Therefore, NO SCHOOL SHOPPING has been done. BTW.....school starts on Monday. As long as we are moving in the right direction, we are happy and content to juggle what we can. Our lives are blessed greatly. It feels so great to all be home together. I realize that when you are away from home you miss the little things like soft 2 ply toilet paper. Yes, we splurge on soft TP. Also, hair conditioner......what a luxury. Most of all I loved snuggling with everyone in MY bed. Going to bed each night and knowing that all my kids are tucked in under one roof.

I have to Thank my wonderful husband and kids that made sure the house was spotless for Kaidence to come home. Laundry done, put away and everything. He even cleaned out my laundry room. It felt wonderful coming home.

Thanks for checking in, we will let you know what happens on Friday!

A small little problem....she doesnt want to go H - - -!

2010-08-14T18:20:00.003-06:00

This morning started out a little rough for Miss K. She no longer has access to any lines and therefore IV team spent far too long in our room this morning. Too many veins have been blown out this last week and they can no longer get ANY IV access to her for blood draws. The poor girl has bruises everywhere. I think they tried 5 or 6 IV's this morning. So therefore, cardiology requested that all morning labs be canceled. We will just keep our fingers crossed that things will continue to be stable until Friday. She has a junky cough and some fluid in her lungs but is keeping her O2 levels where they need to be. So far they are just watching it.

Tonight she is TRYING to get her last IVIG treatment before heading home, but the darn IV is shot. Knowing that she has no more access. We are ready to have her stand on her head to see if it will work long enough to finish. Fellow tx moms who's kids have needed IVIG, does it make your kiddos a little grumpy? It seems to do this with Kaidence. She just wants to be left alone.

Other than that, she has had a great day. However, we now have a problem. After getting to order whatever she wants and whenever, riding a bike around, driving in her little police care, glitter, painting, coloring and bubbles.......Miss K informed me tonight that she does NOT want to go home. WHAT THE HECK?????? I told her that I was sorry, but mommy was ready to be home. I haven't been home since August 1st. Not even stepped in the house. So to my fellow PCMC frequent fliers....stay away from child life and don't let your child have any fun when they come. What kid doesn't want to leave? Obviously she doesn't remember being intubated, the talk of crashing her onto ECMO or her mom once again pleading that she not die. Maybe they should have wasted some of her drugs on me, I wouldn't mind not remembering.

BTW, am I the only mom that finds herself living on 'uncrustable' PB & J sandwiches when here? That's all I seem to eat. Is it because it makes us feel closer to home and our daily routine? I think it must be.

Oh Kaidence. Your mommy loves you so. You make smile, you make me laugh and you also make me want to cry some days. Thanks for being who you are BUT, I am NOT letting you stay tomorrow!!!

Good News!

2010-08-13T18:29:00.003-06:00

Kaidence went in bright and early this morning for her heart cath. Everything went well. Her pressures were so much better. We just got the biopsy results. Her antibody rejection is only
"Suspicious AMR" where as last week it lights and sirens positive AMR. We are SO happy with the results, considering we are short 2 blood dialysis treatments. I have had so much anxiety today. The plan has changed a bit. Tonight we will start some new treatments called IVIG. She will get one tonight, tomorrow and the go H _ _ _ _ on Sunday. A whole week earlier than expected YEAH!!!!!! Kaidence has a BIG list of meds once again, but not as many doses as post transplant. That will taper off over time. She cant wait to get home and see her doggy Kirby. Next Friday, Kaidence will have another heart cath and they will once again biopsy just to be sure those antibodies aren't trying to pop up again. Appointments with cardiology will be weekly now for the next little while. I am ok with that, because I am a bit more paranoid now. I prefer they closely watch her.

Today Kaidence has had a good day. She is eating well and keeps me busy. She is patient and kind to the nurses and they all seemed amazed at what a polite little 3 year old she is. She never throws any fits here and always wants to help her nurses. Those doing her dialysis treatments were also amazed at what a good natured, sweet little girl she is. I am proud of my Kaidence. I never want her to be a "cardiology brat". We work hard to try to avoid that.
Doesn't mean she's always on her best behavior, but no problems this trip. Today she was SO excited for me to take her up to the patio and ride a bike. We had to scrub the thing down so she could ride it, but it was so worth it. The sunshine felt great as well. Tomorrow we are hoping to go up again and Kaidence will get to paint the walls and concrete of the patio until her heart is content. She has become a little artist this hospital stay. Yesterday she painted, used stickers, made a magic wand and had fun with glue and glitter. Lets just say it looked like "Fancy Nancy" threw up in her room. In fact, she still had glitter on her body this morning when she went to the cath lab.

Thank You all for your prayers this week. It was hard and unexpected. It was heartbreaking to see Kaidence so deathly ill. I am so grateful for prayer, fasting, great family and friends. Thank you for always being there for us. We could not walk this journey alone.

Heart Cath in the Morning

2010-08-12T21:39:00.002-06:00

Oh, I am once again ready for bed. So I will keep this short and sweet. Today Kaidence had 2 different attempts to do dialysis on her blood. Both attempts failed because her lines aren't working well. Because these lines go into her heart and are so invasive to redo (they are not IV's) cardiology has come up with a new plan. Its not what they ideally wanted, but they hate to put her through more procedures just to get working lines. Kaidence has only had 3 of the 5 dialysis treatments.

Here is where we once again hope you will pray for Kaidence. Tomorrow morning at 7 am Kaidence will go in for another heart biopsy. With no access for the dialysis we are hoping that the 3 treatments she did get have gotten rid of the antibodies. If not, she will under go more procedures to place new lines. These lines are risky because they can carry a great risk of infection, so the sooner you can get them out....the better. The docs are really happy with how well K is looking. Her labs look great and so they are hoping that things could possibly work out for tomorrow. If that is the case, she would likely be coming home in the next few days. If not, we will just cross that bridge then.

That's today's news. Hoping that the cath goes well ( after her episode, I am pretty nervous for the morning) and that their are NO MORE NAUGHTY ANTIBODIES!!!!

Busy, Busy

2010-08-11T20:05:00.003-06:00

I knew I would forget everything that happened yesterday, but I was just too tired to post. Yesterday Kaidence got her 3rd blood treatment. It went well. The gallop that the docs could hear in her heart beat is gone (good sign). We were moved to the floor sooner than they expected because she has made such good improvement much quicker than thought. I must say that it is nice having our own bathroom, because I live in it! I had an OB appointment and the babies amniotic fluid is getting low. Therefore, I have been instructed to rest (ha, ha) and drink even more!!!

Today, Kaidence had some dressing changes on her central lines. Her labs look good and her echo had improved from the one 2 days ago. Her heart looks like its starting to slowly recover its function. Did I thank you yet for the prayers? They are slowly starting to taper her steroids. Kaidence is back to being Kaidence. Today she wanted to run the halls, but she cant really go to far because of her immunosuppression. The lines in her leg make her hobble around, but she is happy. We spent the day convincing her to eat the yummy food, trying to get her to drink, getting a new g-tube, echo, dressing changes, unclotting her central line in the neck, coloring, painting, putting stickers EVERYWHERE, meds, meds and more meds.

Tomorrow she will get another treatment on her blood. During these treatments she is hooked up to a machine and they slowly pull the blood out of her body through her neck, filter out her plasma and replace the blood through her groin with new plasma. Monday she will have another heart cath to see how it is working and check for rejection. It turns out that her body has made 2 different types of antibodies against her donor heart. This treatment should pull them all out of her blood and hopefully with extra meds we can trick her body and get it to stop making them.

So basically that's the plan. Kaidence has made such an amazing improvement. I am so glad that it is this week and not the last. I think it will take some time for me to relax a little about what happened days ago, but slowly I will work through it and get back on track. I don't want to live fearing every moment knowing how quickly it can change. I had just reached a new found confidence in Kaidence's health and Independence when this happened. It only took 2 1/2 years. Hopefully, I can mentally get back to our normal as soon as possible. Thank you everyone for all of your support. I could never imagine doing this without you.

Going to Bed

2010-08-10T21:25:00.003-06:00

I promise that I will update tomorrow. I am just too exhausted. Just know that Kaidence is doing better and we even moved out of the CICU today, sooner than expected. Thank You for your love and prayers. Hope you all have a good night. I am heading to bed now.

A GOOD DAY!!!!!!

2010-08-09T16:31:00.003-06:00

I know, I should have posted long ago. The truth is that Kaidence looks so much better and therefore I have been BUSY! Yesterday she had another treatment on her blood. This time everything went much smoother. She started waking up a little more yesterday. She had a very hard time coming off the narcotics and was having some pretty bad night terrors (med side effect). She had no idea who Mike and I were, yet she was yelling for mama and dad. Her blood sugar is getting better and they have taken her off the insulin. As of midnight, Kaidence was taken off the Milrinone (heart failure med that helps your heart squeeze). Her echo today looked the same as 2 days ago, but the doc is happy with that because the one 2 days ago she was on the milrinone and today she wasn't. Therefore, her heart seems to slowly be getting better.

Today, Kaidence is more like herself. She looks pretty dang good in fact. Many are relieved at how Kaidence is turning around. They all said they were very worried. Some nurses called to check on her as well over the weekend. I am glad she is so loved and cared for.

Today we cleaned all the tape marks off her, gave her a bath, did her hair, painted her toes, she has even had a little to eat. She is still very weak and has a hard time walking a few feet, but she will get there. Her poor body is so bruised from trying to get central line access. She does have some issues with the skin around a line that they are closely watching for infection.

So the plan is to do her blood dialysis in the morning. Treatments will continue this week. She will then have another heart cath on Monday to see if the treatment is doing what it should. she will then have 2 days of IVIG treatment.

That's about it for the day. Lets just hope these treatments are working. Thank You for the prayers, if you could see what my eyes have seen this last week... you would never doubt that prayers are heard. I am amazed by her turn around.

A New Day.

2010-08-07T11:45:00.004-06:00

First, I want to Thank everyone for once again praying for Little Kaidence and our family. Your prayers have been felt.

After thinking that we were losing Kaidence on Thursday, I have yet again had much time to ponder. I am so grateful to be where we were, when we were. I am so grateful to have the Dr. P there. I didn't realize until last night that they pulled him out of the ER when K had her episode. However, the moment he showed up I felt so much relief. I totally trust him and he knows Kaidence.

Mike and I were able to get some sleep last night, together on on our twin bed. Kaidence is looking better and this morning she was .......EXTUBATED!!!!!! She is still pretty drugged, but I can tell she is happier.

Her echo this morning showed that her heart is still very big and her valve is leaking a great deal. That however is to be expected. Our hope is that with time and treatment, it will resolve over the next few months. Her labs are looking better. She is still on insulin because high doses of steroids have thrown her blood sugar. She is still on IV meds to help her heart pump. I am happy with her progress, it will take baby steps but we are heading in the right direction now. Hopefully, her heart can make a full recovery.

We will be in the CICU for at least a week, possibly longer. Her next dialysis treatment for her blood will be tomorrow morning. We are praying that these dang antibodies will go away and that these treatments will help

Thank you again for everything. Our hearts are full once again.

We WILL have a good day.........

2010-08-06T11:25:00.003-06:00

I think its safe to say that we are TIRED!!! Went to bed about 4 AM after 2 failed attempts to do the dialysis on her blood. The line they placed last night, is not working for what they need. She had a blood transfusion last night( thanks to all those that donate blood). New line this morning and getting ready for attempt 3 for the dialysis. K needs this to work to get rid of her naughty antibodies and we need to get this into her system quickly before her heart failure gets worse.

My emotions are, shall we say...........VERY UNSTABLE. Being 30 weeks pregger most likely does not help. It is heart breaking to see Kaidence this way again. Its unsettling, it scares me. I think I am haunted by the fact that Kaidence just 48 hours ago was running, dancing, swinging on the swing set at the cabin and now........... I keep thinking, why didn't I give her another big hug yesterday before her heart cath. I try to embrace those moments with all my kiddos, but for some reason when something like this happens...it seems that you never did it enough.

Kaidence is not fighting the breathing tube today. She seems comfortable and for that I am so thankful. She received a blood transfusion yesterday because a lot was lost into the machine during the dialysis last evening. We are taking one day at a time and are hoping and praying that later today she will start to turn around.

I take so much comfort in knowing that she has so many doctors and nurses that love her helping in her care. Even if they aren't directly involved today in her care, they are still stopping by to check on her. We love the great people here and we know that they will do all they can for her.

Today your prayers are being felt once again. Its amazing the gift of comfort they can bring. Its moments like this that I know Heavenly Father truly walks beside me. My heart is overwhelmed by love and mercy. I am once again humbled by these experiences.

Like I always say "Faith makes things possible.......NOT easy. Thank you all for praying for my baby girl. I guess she is NOT a baby. Last night when she was intubated the nurses keep calling her "Baby Girl" because that is what they always called her. Kaidence briefly tried opening her eyes and she shook her head as she tried to mouth "I not a baby". I know that she is still in there somewhere.

Thank you, we feel overwhelmed by your love, prayers and support. Thanks for loving her. We will keep you posted.

ROUGH NIGHT.

2010-08-05T22:58:00.003-06:00

Today has been rough. Much rougher than any of us expected. How does a kiddo go to the opposite extreme so quickly? Honestly, it terrifies me.

The attempts for the PICC line in her arm failed. She came back to the CICU intubated. She has been miserable and has fought the breathing tube all night. That breaks my heart watching her coughing, crying and not being able to hear her. Tonight they placed a line in her groin and planned to extubate after. However, as I waited outside her room her heart rate and blood pressure severely dropped. As I could hear them rushing around for emergency medications I was told that Kaidence was seriously ill and that I should go and be by her bedside. Mike was on his way to the hospital after grabbing our stuff from the cabin. I buried my face into Kaidence and once again found myself pleading with Heavenly Father to let me keep my baby girl. I know that ECMO was briefly discussed. Kaidence's HR and BP have are looking better at this moment.

The biopsy came back and unfortunately Kaidence's rejection is with her antibodies. This is what we did NOT want. The plan was to start her blood on dialysis tomorrow, but because of tonight's episode they are starting tonight. In fact, in a few minutes. PLEASE PRAY for kaidence. This treatment could once again drop her BP and its already low.

For now I think that is all. I am exhausted and figure we still have a long night ahead of us. This brings back too many memories and emotions. I am scared, I am sad, I love my little girl.
Thank You all for loving Little Miss K!

Rejection Update!

2010-08-05T14:20:00.002-06:00

It turns out that Kaidence's rejection is much worse than we originally thought. She had her cath this morning, is currently having a PICC line placed and then she is being moved to the CICU. We will know the severity of the rejection more accurately tonight. We have been told to plan 1-2 weeks in the hospital. I will let you know the results when I get them tonight. We are waiting to see her. I keep going over and over in my mind what I missed. Did she have warning signs earlier that I missed? I don't think so. She has done so well, its hard to see her healthy heart sick.

Thank You for your prayers, we need them.

REJECTION!

2010-08-05T10:09:00.004-06:00

Please keep Kaidence in your prayers. We drove down from the cabin last night to PCMC after we noticed some changes in Kaidence. It looks as though her body is fighting her Beautiful Angel heart. Her heart is in rejection and Kaidence has been admitted to the hospital. I knew it was going to be a bummer visit when they put us in our 'bad luck' ER room and yes, we have certain rooms that bring us good luck. Anyhow, when they came to me and told me her heart was large, it made me sick. This is our reality with transplant. We knew when we went into it that we were trading one basket of problems for another. However, we have been extremely blessed and this is the first time K has been admitted for rejection. I guess deep inside you always hope that your child will somehow be the one that goes rejection free.

They have started her back on heavy duty immunosuppression (so I am back to being a GERM FREAK......ok, not sure I ever stopped that one). But seriously, we will have to be very careful again with who comes into our home for a little while.

The plan for today is to take Kaidence into the cath lab around 11 and biopsy her heart. This will tell us what type of rejection she has (cellular or antibody).....we are hoping for cellular.

We are so grateful for her beautiful heart. We know that it came from a tough little guy that too played hard and lived life to the fullest. We know it is strong and as Kaidence always says "My heart is Happy". And in the end....that is what matters!

Thanks for your prayers, we will keep you posted.

DADDY GRADUATED!!!!

2010-07-21T21:47:00.003-06:00

It's official, my hubby GRADUATED with his degree. Its been a long journey with everything these last few years but you stuck with it and now ITS DONE!!!!!!!!!!!!!!!!!!!!!!!!!! Most of all, I am PROUD of you and I LOVE YOU!!!

* Kaidence is doing GREAT!!!!!! Holy cow, I cant keep this girl fed. She is an eating machine. I must admit that I am not use to feeding her so much. Tonight at dinner she ate more meat than anyone at the table. She LOVES meat!

I have had many people think that Kaidence must have had her surgery because her voice is noticeably louder and much clearer. It is still softer when compared to other children, but for her it's a major improvement. We feel so blessed by the fact that her vocal chords are now healed and all the concerns that we had are starting to resolve themselves because of this. What a blessing.

Kaidence just finished her swimming lessons. She loves the water and loved going everyday. She also got her first tan line despite all of my best efforts to slather her. Everyone needs some Vit D, right? Sunscreen is part of our daily routine. Due to the fact that she is on immunosuppression drugs, she is at a higher risk for cancers. Skin cancers being one of the big ones. So therefore we have been instructed by her docs to keep her covered and we do. At least she hasn't burned. It has protected her that much. People often comment on how pale she is, I just tell them that she's my little vampire. After all, vampires are 'the thing' right now.

Some History on her vocal chords

2010-06-29T12:56:00.004-06:00

Kaidence was SUPER grumpy last night coming out of the anesthesia, WOW! She was very upset that they put her IV in her foot and not her hand. The moods swings were a little more than I had seen with the versed wearing off in the past. However, awhile after we got her home she seemed to click back into her normal, sweet self. She was a hungry stinker and had 2 bowls of Captain Crunch and some cheese (and she wanted a taste of Coke...no idea where that comes from). So much for slowly getting in to her regular diet. But she did notice that she didn't have an owie on her neck.

So a little history leading up to last nights events for a better understanding. Back in 2007 they started scoping Kaidence when she was in the CICU trying to figure out breathing issues, digestive issues etc. After her transplant they once again looked closely at things because she could not clear her own secretions. At one point a trache was discussed, but very briefly. It was determined during these procedures that Kaidences right vocal chord was indeed paralyzed. He then gave us a year for some slight possible recovery of it, but after that no improvement would take place. So when we took her home post transplant Kaidence was not allowed ANYTHING by mouth, because she could not swallow. When you have a paralyzed vocal chord it affects, your O2, swallowing (your airway never is completely closed) and speech. All of which Kaidence has really struggled with. Months into being home in 2008 Kaidence would undergo all the fancy swallow studies to see if it was safe for her to eat. All the while it being reconfirmed that the vocal chord on the right was paralyzed still. Last summer Kaidence had her tonsils and adenoids removed by a different doc. At that time he also noticed the problem and then referred us on to this other doc for the repair of the chord.

About 2 months ago we took K in to see this doctor. He is the same one that saw her all those times in the CICU and did many of the swallow studies for us. At that point in time I explained that I felt her vocal chord was better because Kaidence now has a faint cry and voice verses nothing at all before. I was hopeful, but then he scoped her that same day. He then told me that her vocal chord was still paralyzed and after reviewing records, it was just as bad as it was originally. It had made NO recovery whatsoever. At this point it was so bad that it was laying off to the side and not in the place it should have been. Your vocal chords make a "V" shape when open. That was when we knew that the surgery was needed to repair this.

We had high hopes that this would fix all of our current issues with Kaidence and so last night when we found out it was no longer the case, I was not too sure what to think. Was this just some freakish misunderstanding for the last 3 years and after all the scopes that confirmed this problem? Or was this another answer to prayers and evidence of the power of the priesthood? Looking back at her blessing last evening before going in, I prefer to believe it was the last situation.

Like I said last night, the doctor was shocked himself. He was not expecting this situation. Both vocal chords were where they should be and both vocal chords moving as she was breathing on her own. Both of which have never been seen before on Kaidence. So needless to say, we are anxious to look further into this situation. We count our blessing that he double checked before he cut. We will meet with this doc and K's GI doc together to discuss what to do next. Likely she will definitely have the 'floppy things' surgically removed. It is also very likely they will want a full GI scope on her and many other test to confirm if this is truly due to reflux. She was checked before to help determine if a Nissen was needed with her G-tube, but it was then determined unnecessary. He does not think that getting the reflux under control will make much difference with the choking and soft voice, but as we know....anything is possible.

So we are done sitting around in the house and letting our summer pass us by. We start swimming lessons next week and look forward to the vacation that was canceled for all of this surgery stuff. I am ready and I am pretty sure my kiddos are too. Thanks for always sending love and prayers our way!

NOT WHAT WE THOUGHT!

2010-06-28T19:23:00.004-06:00

As you all know, Miss K does not follow the rules.......she makes her own. A little over an hour into surgery the doc came out and explained that he no longer thinks that K's vocal chords are paralyzed. He seemed very surprised. However he did find some weird swelling and floppy things in her throat consistent with acid reflux. The floppy things can be surgically removed, however not tonight. We need to do some investigating into whether this is really the case. Removing the 'floppy things' will help improve her sleep apnea and could possibly help her sleep apnea. He however does NOT seem to think that it will help her choking issues and her very soft voice. Bummer! That part has me concerned.

The plan, we will go home tonight once the anesthesia wear off and then meet with the surgeon and her GI doctor to get a plan in place. Post transplant she use to vomit 8-10 times daily, but has not for a long time. We had to take her off reflux meds because it caused her white count to drop dangerously low. We haven't seen any problems with reflux, but I guess you never know.

I am tired, smell like pee and need to go be with my baby girl. I wonder if she will be shocked by how easy her surgery was. Do you think she will be sad that she still doesn't have her Mermaid voice?

In Surgery!

2010-06-28T18:29:00.003-06:00

They took Miss K in around 6:15 this evening. The doc said that it could take anywhere from 2-4 hours depending on how small the nerves are in her neck. I have a feeling that they will be pretty small, so I am not expecting anything too soon.

Kaidence did amazingly well today without being able to eat. She is such a sweetheart. She never complained, cried or threw a fit. She is such a good girl. Before surgery Mike and I took her to see Toy Story 3. She loved the movie and then we drove straight to the hospital.

We checked in and then the nurse gave her some versed, but nobody came to take Kaidence into surgery. Therefore, my sweet little Kaidence peed all over my lap. I think she tried telling me, but her speech was so slurred it was hard to understand anything. She had that oooopps look on her face, but thats ok. Just looks like my water broke and I now smell like urine.

Thanks for checking in on K, we will keep you posted if we hear anything.

SURGERY RESCHEDULED FOR MONDAY NIGHT!

2010-06-25T12:42:00.007-06:00

(This post was written Friday but never posted. I am too lazy to rewrite a current post and all the info is still the same. ) However, I am no longer grumpy but seem to be a little more nervous for the surgery than I was last week.

Yes, I am still frustrated. One may even say grumpy about the whole surgery ordeal. I am sick of house arrest (although we should be use to it), worried because K has already been off her baby aspirin for the 2 weeks in prep for the surgery and she needs to get back on it and concerned because as of July 1st she no longer has her secondary insurance. I guess at least we will still have the one insurance, that's a blessing. Shall we just end with the fact that I feel like I have some serious pregger hormones right now.

This morning his office called and let me know that we will not know until Monday when we can reschedule her. All the OR's are booked out and on Monday they are over capacity. Then her Doc is leaving town for 3 weeks. There is no other doctor that knows how to perform this surgery, so that is not an option.

The scheduler just called to let us know that the doc called the hospital and they will allow him to perform a late surgery on Monday night. He has a full day of appointments and will perform that evening. I guess they are over capacity, so who knows how smoothly this will go. I think my biggest concern is that at the end of the day the OR has been known to run hours behind and I have a 3 year old that does not understand the no eating/drinking for hours on end. That is why the little ones always get the first morning appointments available. I will be praying that things run close to 'on schedule' and that K will have patience and just not be hungry or thirsty that day. Easy enough, right?

Kaidence was sad that she did not get to go to the hospital and have a ride in the wagon. She also wanted to wear her new mermaid nightgown she got from Nanna and Papa to help celebrate her new Mermaid voice. What the heck, I had to unpack her suitcase anyhow, so she wore it proudly to bed last night.

My cute little Camden lost his first tooth yesterday (Thurs.) My baby boy is growing up. He was so excited. Part of me was sad because he had planned to stay at my parents house that night because of the surgery and I would miss seeing his excitement from the tooth fairy coming. I guess its how it goes. McCaden lost his first tooth the night Kaidence got her heart transplant. I wasn't even there for it. He spent the night at the neighbors and the tooth fairy paid him a visit there. Yes, I cried knowing that I missed it. Yes, I also had guilt. BUT, today they are with their Nanna and Papa at Boondocks having a great time and K and I are just hanging out at home watching Sprout Tv.

We will keep you posted on Monday. Good Luck to all our friends heading into procedures today up at the hospital. Wish we were there to visit with you over a scrumptious meal at 'The Rainbow.' Know that we are sending happy thoughts and prayers your way.

Surgery Canceled!

2010-06-24T18:11:00.001-06:00

Kaidence's surgeon just called and canceled her surgery for tomorrow because he has a doctors appointment for himself. I guess someone forgot to let me know. AWWWWWWWHHHHHH! Bags packed, boys farmed off, Mike off work, Kaidence not sick. Seriously? This is what happens when you cancel a family vacation for a surgery. So I guess Miss K will continue her house arrest a little longer. I will end being positive "maybe this is meant to be."
THE END

Surgery Time!

2010-06-22T15:53:00.000-06:00

Well, Kaidene's surgery date is almost here. As much as I get super nervous for these sorts of things, I am grateful that the time has finally come. The vocal chord issue with Kaidence has been a bigger issue for her than I think we truly realized in the beginning. I am so grateful that technology is where it is and that we can improve this situation and her safety, I am a wreck sending K anywhere because she does choke so easily. She had a little episode on Sunday in church and both Mike and I looked at each other and said only 5 more days.

We are scared but optimistic. Hopefully this will be the final thing that needs to be fixed from the many months that she was sick in the ICU. This is the surgery that represents that we now have a 'big girl'. She needs it to go to preschool and had to reach a certain age to have it done. Ever since we brought K home from transplant we had a list of things we needed to do or get fixed on her. Besides heart caths (she will have those for the rest of her life) this surgery is the last thing on our list (knocking on wood).

I heard her tell the neighbor that she was having "surgery on her vocal chord" she then proceeded to tell him that she would also get "an IV in my arm." So needless to say, she is prepared. She told Mike and I today that she would smell stuff in her oxygen and then she threw herself back on the bed and pretended to snore. I am not sure if I laugh or cry. She is telling others that her mommy, daddy and Auntie (a favorite nurse at the hospital) will be there when she wakes up with a princess balloon. I guess we had better deliver.

I am so proud of my baby girl. She is strong, she is a fighter and she has been blessed with a grace, patience and understanding well beyond her age. No doubt, another blessing from her Father in Heaven.

Fetal Echo Results!

2010-06-13T19:49:00.000-06:00

I was waiting to post because I have some fun pics of Kaidence that I wanted to load.......pictures not loaded. I will post anyhow. Friday was our fetal echo and I was nervous. Our appointment was at 9:30 at Primary Children's and we took Miss K with so that she could see that others get these things done as well. Everything with the babies heart looks normal. The function is great and as of this point the baby does not show signs of cardiomyopathy. Big Sigh.........although, they were sure to let us know that things can always show up later in life.

I found Kaidence's pathology report from when she was transplanted. When they explanted her old heart it was cut up and studied and then a report was written on the findings. Kaidence had normal heart structure, besides the things that were caused from her heart failure and cardiomyopathy. So basically, no abnormal structure to it. I also read in a genetics report that all findings are still leading to viral myocarditis which led to dilated cardiomyopathy. That every test run, came up negative for any genetic findings. Cardiomyopathy is one of those diseases that does not have much known about it yet. During our fetal echo the doctor said that research is just starting to scratch the tip of the iceberg for cardiomyopathy.

So for now we are counting our blessings that so far things look well with the baby. The baby is getting pretty active, especially when I lay down for bed. We are so excited for our new little one, although it still seems so far away.
We embrace these moments of peace that the Lord grants us.

I will get those pictures loaded, hopefully this week.

OUR BABY IS...............

2010-06-01T14:38:00.001-06:00

A ............SURPRISE!!!! I guess that you will just have to wait and see as well. McCaden was the only one we tried finding out with. Camden was pretty dang obvious and Kaidence we left as a surprise and she has been full of them ever since. We are just hoping this one will be a surprise only in the beginning.

I was nervous as today approached. They took some extra good looks at the heart. So far everything with her looks good (knocking on wood). The baby is a great size for where it should be and my progesterone shots so far seem to be doing their job and keeping preterm labor away. My migraines have finally tapered off, that is a blessing in itself.....I can function again!!! We go for our fetal echo on the 11th of this month, I know that I will be nervous all over again. Kaidence's cardiologist said that sometimes cardiomyopathy can be diagnosed on ultrasound and other times it doesn't show up for awhile or even years. However, we are all still banking on the fact that she only became ill because of the stomach virus. We are just playing it safe.

Better go. We still have much cleaning up to do. Our basement flooded this weekend. Who would have thought that 2 hours of having the toilet tank filling over would cause so much of a mess and make it into so many different rooms. Kinda sad, I had to throw away a lot of pictures from high school and other things. I guess that flooding is one quick way to dejunk!

PARANOID AND A BUSY DAY!

2010-05-20T19:18:00.001-06:00

PARANOID!!!!!! Any one else have this problem???? I do really well for months at a time and then all of a sudden, I start to ask questions. Because we have no "positive"diagnosis for Kaidence, we have to just go off thinking it was viral. With no family history, there is always the chance that it is some genetic gene that started with Mike and I. I know for 100% that this IS part of Kaidence's plan, that I do not doubt. However, every now and again, I start questioning myself. What if we never went on that vacation? What if nobody had been sick? What if it really isn't from the virus? What if she had it all along and I never noticed? What if my other children have the form of Cardiomyopathy that isn't discovered until around the time of puberty? What if I did something wrong during pregnancy? I also have plenty of "what ifs" for Kaidence's future, but that I know is once again in the Lord's hands. This goes on and on. Normally, I don't think much about it. However, I think that with this new pregnancy the paranoid me is taking over. I know that I have my fetal echo coming up and my hands start sweating when I think about it. I knew that I would have these feeling and worries if I ever decided to have another child, just didn't think I would find myself looking so far into Kaidence's past. However, no matter how many thoughts I have of the "what if''s,"they could never compare to the countless times a day that I count my blessings and realize the miracles I have seen in the "what IS" in my life. I understand how incredibly blessed we are. Kaidence is here because of an AMAZING family, a darling little boy and a loving Heavenly Father that knows her plan in life.

Anyhow, today was a long day at the hospital. It started out with labs at 8:15, ENT at 11:45 and then cardiology at 2:00. We made it back home around 5:00. K's ENT appointment went well. They scoped her today (sent a camera up her nose and down her throat) to get a look at her vocal chords. I explained to her earlier what was going to happen and she was such an angel. Yes, she cried as they were scoping her, but that was it. God has defiantly blessed this little girl with a very unique look on life and patience.

The verdict is that K would greatly benefit from the vocal chord repair. It has only been done on 20-50 kiddos (max) in the US and Dr. Smith says that he has done at least half of them. They will take a nerve from her neck and thread it through her vocal chord. This will not cause the vocal chord to start working again, but it does give it some physical tone and bulk (like with muscles) so the left vocal chord will not have to compensate so much. Currently, Kaidence's airway does not completely close when it should. This is why I am so paranoid about her choking or aspirating and this is why she does it so often. Having her vocal chord repaired will help her voice and cough be stronger, helps with her O2, help her swallow easier and protect her airway when eating.

Dr Smith feels that this will be successful with Kaidence and we are excited to get it done. You never want your child to have to have surgery, but she needs to go to school and play with friends without having her mommy there to do the Heimlich if something happens. She knows that today's ENT appointment was to help her voice so that she can sing like the Little Mermaid, with that explanation she was content. Her surgery will take place in June.

Next was cardiology. I was SO nervous for today's appointment. Once again I think it was a combination of the pregnancy hormones, Kaidence's recent headaches and the fact the we hadn't been to cardiology for 3 WHOLE MONTHS. I was so nervous for the echo and today it seemed to take longer than usual. When they left to check the pictures they were gone for awhile and then came back saying they needed a couple more. This usually happens to us if something looks off. Thankfully her echo looked great and we don't have to go back for another 3 months!

Kaidence's white count is a little high, but we think that is just from a viral infection . We will keep a close eye on that and her headaches. Cardiology was not thrilled with Kaidence's recent weight loss, which I was prepared to hear about. I explained to them that she was slowly gaining, but then Kaidence needed to be like a normal child. That means GOOD EATING HABITS. We know that she CAN eat, therefore she needs to learn that she cannot have Instant Breakfast for every meal with ice cream and potato chips. What parent would think that was ok for long term? So we have had to pull back and broaden her horizon with 'real food'. This is starting to come along and hopefully her weight will pick back up. She will eat a half of a sandwich at a time, or a whole hot dog without the bun (OK, I know that a hotdog is not 'real food', but have you seen the calories in them?). Oh and does eating ketchup count? She would drink it if I let her. So eating is still our goal and honestly may always be with her.

Kaidence, has started her training so that she can get employment at PCMC in the future. Whether it be in the lab trying to take her own blood, in the Dr's office taking her own BP and temperature or in the echo placing all of her EKG stickers and spreading KY jelly all over her chest with the wand. Watch out and fear for your jobs.....she is ready.

Today during her echo she was so cute. As they were taking ultrasound pictures of her heart, they turned on the volume so you could hear her heart beat. As proud as could be she turned her head quickly to Belle doing the ultrasound and said "that's my babies heart beat in my tummy." The rest of the ultrasound she kept pointing to the screen and saying "see my baby" as she rubbed her belly button. Yes, she has been to my ultrasounds and as always.....there is never a dull moment with Kaidence.

For being at the hospital today for over 6 hours you would think that Miss K was ready to go home. Nope, not the case. In fact she spent the majority of her appointment hanging out with the MA's at their desk while I sat in the room and chatted with the transplant team. I kept telling her that she needed to come back in the room, but they insisted that she was fine to hang out with them. And when it was time to go home.......she cried and I had to carry her out of cardiology. She may not have been ready to leave, but I sure as heck was.

So that sums up the day and gets things up to speed with Kaidence. Thanks for checking in and have a good one!!!!

.....IT REALLY DOES HAPPEN

2010-04-16T14:36:00.000-06:00

Is it really happening? I keep asking myself, pinching myself. KAIDENCE is EATING and taking all of her MEDS by MOUTH!!!!!

Since July 2007 when Kaidence got the virus that attacked her heart and put her into heart failure see has been tube fed. During the many months she spent in the hospital she was in a medical coma and therefore tube fed into her intestines to prevent throwing up and aspirating while intubated. When she was transplanted, we found that she had to relearn how to swallow and everything else because she had been intubated so long. We took her home with suction and suctioned her every couple of hours. We also learned that she had damage done from the lengthy intubation period and that her vocal chord had become paralyzed, therefore she could not cough and protect her airway.

Months after transplant we pulled kaidence's tube from the intestines into the stomach and she started getting food in her tummy for the first time in a VERY long time. At that point I thought the whole feeding thing would be a breeze. Who doesn't love to eat????? I was so wrong. We knew we were once again into for the long haul and so that same summer she got her g-tube - it was the greatest thing ever!!!! Kaidence was throwing up 5-6 times a day around the clock. Oh, the smell of thrown up vanilla pediasure! Her stomach was not stretched. Needless to say many of you moms know that struggle from this point on. The laying in bed at night and thinking of how you can run feeds at some magical rate to keep your kiddo from puking. How you can quickly put weight on your kiddo before the next cardiology appointment.

After countless hours of feeding therapy, wasted baby food, doing the Heimlich, chipmunk cheeks full of food that she would spit everywhere 20 minutes later and many tears of frustration...........it has happened. It started when I would tell her that if she chose to not eat her food that I would have to feed her through her g-tube. That was all it took, she would say "no g-tube" and finish every time. I have waited on posting because I am afraid I will jinx us. Suddenly Kaidence is an eating machine. She is constantly hungry for anything and everything. I find myself just starring at her. I cannot believe my eyes. For example last night I gave her all the left over mashed potato's and gravy knowing that she would never eat it all, but wanting to get rid of the left overs. She ate every bit of it. Then later that night we went to the Artic Circle for ice cream. I almost got her a kiddie cone, but then knew that she would want the same as her brothers. It was a big ice cream cone so I figured I would have some of hers. Not so, she ate everything....including the cone. Then she proceeded to tell me that she wanted a cheeseburger. What?????? So I order her a cheeseburger and had her split it with camden. She ate every last bit of it.

With her meds we started by flavoring her blood pressure medication and she loved it. So we then went to the others. Now she is taking all of her medications by mouth as well. Is it time to say goodbye to the g-tube? Possibly, but I m too afraid. It comes in much to handy when she gets sick. I plan on keeping it for awhile just to be safe. Also I want her to have it for a vocal chord surgery that will hopefully be coming up in the next couple of months. I am sure that will be pretty rough on her and we will need a way to get her meds and food during recovery. I figure, if you have it you may as well use it.

As of right now I have a garage full of Nutren Jr Vanilla. It does not have the added fiber. I may also have some cans of Duocal. I am not getting rid of all of it, just in case. However, as the expiration dates get closer I will be getting rid of it. I have some that I do need to get rid of, if you are interested in it, you may have it. Just let me know!

AN EASTER HEART FOR MASON!!!

2010-04-04T09:28:00.000-06:00

Happy Easter family and friends......as you know I BELIEVE IN MIRACLES. I KNOW that Heavenly Father has a PLAN for each of us. My heart is full of emotion for these things that I know and have witnessed in our own lives. Kaidence's little heart buddy Mason is getting a NEW HEART for EASTER.

If you remember, Mason is the little boy who's mom I sat and cried with while the doctors at PCMC told her that Mason was not eligible for a new heart and that he had about 3 months to spend with his family. Since then Stanford University has agreed to list Mason for a heart. Summer has been living at Stanford University while Mason was listed for a heart and her hubby and other kiddos have been here in Utah.

Mason should be going in for surgery this afternoon. You can follow his blog HERE. Please pray for the many involved. PLEASE pray for the sweet family that on this Easter day with their broken hearts, turned to another and gave them this gift....of LIFE and HOPE. How appropriate for today.

May your hearts be fuller today and may the love that Heavenly Father has for each of you be known and treasured.

We love you Mason!

A SURPRISE FOR US!

2010-03-19T08:54:00.000-06:00

Well it seems as though I cannot hide much longer. I am here to announce that we will have a new addition to our family this October. OK, I always deliver a month early so most likely this September. We are excited, terrified and thankful all in the same breath.

The kids are very excited and I think that this will be such a great thing for Camden to see what it is like to have a healthy little baby in the family and great for Kaidence in so many ways as it will help to pull that attention away from her in a healthy, normal way. After all, we want her to be a normal and well rounded kiddo. McCaden is pretty excited as well, except for the dirty diaper thing.

This decision was one that we have contemplated for a couple of years. Mike and I always wanted more kids, but then Kaidence got sick. I remember sitting in her hospital room and telling him that he might as well get fixed because I WAS DONE!!!! How could I chance my heart on more heartbreak? We met with genetics last summer and no new info was given. They still have no hard evidence of exactly what happened with Kaidence, but they really think that the stomach virus was the causes of her heart failure and deep down we do as well, but I still find myself wondering if I did something wrong. They basically think it was all bad luck. We have always had issues with pregnancy losses in the past, however after everything we have seen with Kaidence and all the amazing families that we have met along the way we now have a different perspective than many others may. I guess the innocence of 'be the perfect, healthy mom during your pregnancy and you will deliver a perfect healthy baby' is no longer.

Could we handle another? What about the age gap if something happened to Kaidence? What about the times that we spend in the hospital, the boys are already use to life this way? What if we had another sick baby? Can I give everyone enough attention? What if I am on bed rest again, who would take K to cardiology? What if we delivered another preemie like McCaden? On and on this went. We could see so much good and happiness, but we could also see all the "what if''s".

Needless to say, Mike and I did what we have learned to do with many other important things. We prayed and turned it over to the Lord. He knew what was meant for our family and he knew that we would be accepting either way. Nothing happened for a long time, in fact we just figured that was our answer and that was that. Then one stressful morning with Kaidence at the hospital we found out. It was the morning if you all remember that her heart stent disappeared from her LPA and they were worried about needing to do open heart surgery that day. I was sick with walking pneumonia, bought a test from the hospital pharmacy (great tests btw and inexpensive too) and took it. I knew that I needed medications and that there was an unlikely but possible chance I could be pregnant. I was shocked to see that I indeed was. I was excited, but guarded. My fear and worry at that moment was on Kaidence and this possible surgery.

Things with K worked out and the reality of the pregnancy was setting in but then I started have possible miscarriage signs. I thought for sure that this was the case, after all I had McCaden (2 miscarriages) Camden (3 Miscarriages) and then Kaidence. We went in and checked the baby and the tech thought the baby was behind in growth and that the heart rate was low so we rescheduled another appointment 2 weeks later. At that appointment I was searching for the little heart beat flutter I think before the tech was and I found it. I could also tell that the baby was much bigger than the last time. Its heart rate at 8 weeks 6 days was 179. I said a silent pray and thanked Heavenly Father for this gift.

We know that Heavenly Father has a plan for our family and each person in it. We will do our best, make the best choices that we can and walk forward in faith, happiness and gratitude for this gift we have been given. I cant help but feel that it is somewhat symbolic. Part of me feels that it is a bit of closer to everything and HOPE for the future. Our family is moving forward. Yes, life is still full of the 'what if''s' and always will be. But I guess that without the 'what if''s' we would not be thankful for the good of the 'what is'.

So there you have it because like I said it is becoming obvious. Baby #4 is due October 13th and we cant wait!

***** Kaidence is doing well. She is still on antibiotics from aspiration pneumonia. She aspirated while drinking her milk and watching "The Little Mermaid".....go figure. We spent last Sunday in the ER with her. Her labs are looking better and she seems to feel fine. Thanks to those who were wondering.

A BIRITHDAY WISH FOR AN ANGEL!

2010-03-02T09:17:00.000-07:00

Happy Birthday to the Little Angel that gave Kaidence her new heart and her new found life.

I never realized that yours and Kaidence's Birthdays are exactly a week apart.! I hope your family knows how amazing they are. I am so thankful that they have allowed us to be a part of their lives. Your picture sits in our home next to a pewter angel statue and a statue of a little girl holding a golden heart. Your smile is infectious. Today we will be sending some balloons to heaven for you....be sure to watch for them. The one with the red heart will be from Kaidence herself. I am sure that McCaden and Camden will find a Spongebob balloon just for you. I wish that I could jump on a plane today just to go and hug you family. Since I can't hug them today, please send them the hug of an Angel, especially to your mommy.

Happy Birthday Sweet Boy! May you have fun running and playing with the angels today!

HAPPY 3RD BIRTHDAY KAIDENCE!

2010-02-23T08:33:00.000-07:00

Well today is Kaidence's 3rd Birthday. I can't believe it! Once she got her new heart, time has just been flying by. She is doing GREAT!!!!!

Here are some fun little things about Kaidence:

1) Kaidence LOVES music. Especially 'The Black Eyed Peas' and 'Beyonce'. Yes, you read that right. We however had to get the edited versions of everything because she picks up on things a little quicker than we thought. Her favorite song in Boom Boom Pow!

2) Kaidence has a recently found obsession with the Little Mermaid. She must think that I have it too because she seems to be part of all of my baths as well.

3) She loves to play Dora and Diego. One day I found her hiding in a corner of the dark basement. She told me "sshhhhh" and that swiper was sleeping. Then she will try to yell as she sticks her hand in front of her, "Swiper, no swiping" and the look on her face is dead serious. I can thank her cousin for this Dora behaviour.

4) Her favorite foods are few and far between. However, sherbet ice cream is a love of hers as well as the hospitals hash browns. Kaidence also loves minty gum. In fact she prefers that over bubble gum. Her eating is still very up and down and we use her g tube every night. Lately our eating during the day hasn't been that great, but maybe once she gets over this dang RSV it will bounce back......I hope!

4) She loves to play in her playhouse that she got from Make A Wish. We cant wait to open it up for the spring. Her and her brothers could play out there all day long. Did I mention that she has the greatest big brothers ever? She could watch SpongeBob with them all day long. (this is a picture if part of her playhouse, sorry it is such a bad picture. I have some others but cant find them at the moment).

5) She is VERY independent and insist I leave the bathroom when she has to go potty. She wants her privacy and to have no one around. Also she has to do everything on her own....ok that gets a bit frustrating for her mom.

6) Kaidence has an amazing gift of patience and understanding. Kaidence is fine when we have to go to the hospital, she is so very brave about it all. I will tell her the night before or the morning of that we have to go. She then asks if she has to get owies and I tell her yes. She is not thrilled but she says "ok, have to get owies". She lets the doctors check her out and get her x-rays, echo's EKG and labs usually all without any tears or fight. This has been such a wonderful blessing not only to Kaidence, but to her mommy as well who takes her to all these appointments. It helps to spare pieces of my heart from breaking over and over again.

7) Kaidence started Sunbeams at church this year. She LOVES it! Also this fall in September my baby girl will start preschool.

8) As many of you know, Kaidence got her first set of 'accidental stitches' last month. Such a normal kid thing. We are heading in the 'normal' direction more and more with each new day,

These are just a few things about Miss K this year. She has been very happy and healthy. Her heart is working perfectly within her chest. We have been in contact with our Donor Family and I love the times I get to talk with them. We love them with everything that we are. They are why we are celebrating Kaidence 3rd Happy Birthday this year. It is because of them that Kaidence's life continues and she gets these many opportunities in life. If you are reading this we love you and thank you for giving me my daughter and for giving her the beautiful experience called 'life'.

Happy Birthday Kaidence, Mommy loves you!

A hole in the forhead and stiches for Miss K!

2010-02-06T23:50:00.000-07:00

I just think that I need to go to bed for a couple of days. This afternoon I decided to go in the basement to get a quick nap because I could hide from the kids. Mike was upstairs with the kiddos when Kaidence decided to fall and put a gaping hole in her forehead. We are guessing that sh e tripped and hit the corner off the crown molding on the floor and the corner angle of the banister. Holy cow, I have always known that heads bleed a lot but...........it was EVERYWHERE!!! My boys were panicked and absolutely upset, I thought about it though, with all she has been through she was always cleaned up by the time they saw her. They were very upset to say the least. Kaidence had a cut on the top of her head and the hole in her forehead (and I mean a HOLE). We got plenty of stares from people in the ER because blood was still everywhere. Tonight the ER said they set a record for being the busiest and I believe them. We just needed stitches and it took us 5 hours of waiting. Kaidence did great, but was not happy. They had her wear some heart shaped sunglasses while they stitched her up. She kept saying over and over "no owies". They refused to put her out like they said they would if she were 'normal'. They worried about her heart, BUT she has a beautiful healthy heart now. It just still freaks out the doctors that aren't cardiologist, because she has been transplanted. They stitched up Kaidences forehead in layers and we are now home.

Has this week been long, or is it just me? I am exhausted and I am going to bed!!!

The end to our week!

2010-02-05T14:29:00.000-07:00

Sorry about the last post. I felt so icky that I just didn't have the energy to post in more detail. I am slowly getting better, and I am SO grateful for that. I just needs a lot of sleep and medication.

Wednesday morning Kaidence had the good old 4AM chest x-ray (oh how we miss those) and then she had her echo later that morning. Both looked good. The stints looked like they were holding. They wanted to keep her there most of the day and then do another chest xray around 4PM. If all looked well then we could go.

So during that waiting time. Mike and I ran upstairs for a 2 hour eye appointment for Camden. We didn't dare cancel, because it took us months to get in. Needless to say, Camden gets to pick out a pair of glasses. He is so excited.

Later that afternoon Dr. Gray came and told us that things still look well and that we could go home. Obviously, we did not need to be in the CICU. I found it interesting that when I took K to the potty in the until she walked by her old room, pointed and said 'my room'. I was shocked! We stayed next door to our old room, in the room that our buddy Ryker stayed in. We thought of him a lot being in there. Kaidence was discharged for the CICU (primary's now has a Cardiac Intensive Care Unit) that evening around 5PM.

So today was a follow up xray to look at those stints. I could see the relief on Dr. Grays face as he told us that everything was still in its place. He was kind. He apologized for the complications this week and said that he knew that it made it a long week of worry for our family as well as all of her doctors. I have a great sense of relief today. We will follow up in cardiology in 2 weeks and check the blood flow to be sure everything is working and that platelets aren't sticking to the stint since it is out in the open. She has been started on baby aspirin to try to help prevent that from happening. Dr. Gray will try to expand the part of the stint that is hanging out of the LPA in her next heart cath in about a year. Other than that no other restriction expect going to Disneyland to ride the rides for 3 months. Shouldn't be a problem since we had no plans to go and do that in the first place (I wish we did though).

So here we are. The week has been long and once again tested our faith in many, to do what was best for Kaidence. This is honestly the first time that I did not know what direction was best for Kaidence. Would surgery be better than a stint that looked unstable and one stint that wasn't even needed in her RPA? I didn't know. I just knew that we turned it over to the Lord, He would know what was best and we accepted that. Thank You for all of your prayers, phone calls and concern for our daughter. Thanks also to my great neighbor and mother in law for babysitting the boys, My Sister for bringing dinner and my other neighbor who brought me a loaf of bread and my Pepsi with a Lime ( I needed it). And MANY thanks to all of our other family and friends for their love and support. We love you all!

HOME!

2010-02-03T17:45:00.000-07:00

I only have a second but wanted to let you know that, we are home. Things looked stable with X-ray and and echo. We will check again on Friday. Thank You for all of your prayers and well wishes. We once again feel that the Lord has blessed our family.

2010-02-02T19:49:00.000-07:00

This K's Dad. Not Telle as usual. I thought I would take a minute and post a quick picture of K back in the PICU. Feels different being here on a visitors visa. Strangely it feels kinda like home. Security knowing she is in good hands. I felt compelled to post this picture to compare with the one on the blog of her Berlin heart. Two years later. We hope and pray everything will work out right for our little K. There is another that could use a few prayers. K's mom is not feeling well and was kicked out of the PICU. She is a little frazzled and doesn't like it when she is not here with her angel. She could use a little comfort and good vibes her way. Hopefully a night of sleep will help her get feeling better. We love ya all and thanks for the support.

DONE!

2010-02-02T19:20:00.000-07:00

Kaidence came out of the cath around 5:45 tonight. I could tell that Dr Gray was not as happy about things as he could have been. They really struggled trying to get that stint placed. They tried numerous times and it kept slipping away. It is somewhat "rigged" for the time being. We are not sure that it will stay in place. If it moves, they will do the open heart surgery tomorrow and remove both stints and patch her LPA andRPA. I guess that time will tell. I have been kicked out of the CICU, because I have strict orders from the doctors to go home and get to bed. Please keep her in your prayers.

Cath update #1

2010-02-02T15:45:00.000-07:00

They took little K in around 2pm this afternoon. We will stick with the same plan as before and then admit her to the CICU. We will cross the other bridge if we have to. I hate this feeling.....I am nervous and sick to my tummy. I have been sick for the last week and a half, so last night Kaidence's respiratory therapist came in checked me out. She seems to think I have walking pneumonia and now I have a fever. Luckily I have some great friends up here that take care of me and they called my in some prescription. I have been fasting and so I took the antibiotics on an empty stomach, I knew it wouldn't be a good idea and it wasn't. Other than that we are waiting and praying. Today has been emotional for so many reasons. It has been a little rough, but we will get through. Worse things could happen. But I am still VERY worried about my K. Keep you posted.

Please pray for KAIDENCE!

2010-02-02T10:14:00.000-07:00

Please pray for Kaidence. We will be fasting today, if any want to join in. Kaidence's stint has moved form her LPA to her RPA. They are taking her back into cath to place a new stint and try to stabilize the stint in the RPA. If they cannot do so they will take her in for Open heart surgery to cut out the stint and then patch her artery. This would be her 3rd time on bypass. It gets more risky each time you do so. She will be going to cath around noon. Please pray for my little princess. We will keep you posted.

A NEW TYPE OF HEART STENT.....COOL!

2010-02-01T12:07:00.000-07:00

The heart cath went well. She went in at 7:30 and was out at 10:00. They said that everything went perfect. Primary Children's just got some new types of stents. Today they decided to give it a try for the first time, on Kaidence. I heard that Dr. Gray was pretty excited about it. Anyhow, this new stent is pretty cool. It is lower profile, therefore it doesnt need as much room to maneuver. It comes with the stent already attached and therefore you have less problems with it pulling away and ending up some place you don't want it. The coolest thing about is that normally, years from now after all the expanding they would eventually need to place a bigger stent. To do so they would have to go in and surgically remove the old one and then patch things up. However, with this new stent, it will grow with her into adulthood. Meaning it will never need to be replaced....AWESOME!!!!

I feel that once again the Lord was watching over us and what was best for Kaidence. I was frustrated that we didn't get it over with during her last cath, but it just didnt feel right at the time. I asked Dr Gray is it was a blessing that we didn't do it in November and he said 'most defiantly'. He said that with where the stent was needed and the angle it would have been much more risky of a procedure with the old type of stent. This one just worked perfectly for Kaidence.

We will stay the night and go home in the morning. Thank You for your prayers, we can sure feel them in moments like these.

MONDAY, MONDAY.....PLEASE BE GOOD TO ME!

2010-01-29T17:33:00.000-07:00

I am such a slacker!!!! I almost dread logging on because I know that I am so behind. However, we are all doing very well. Happy, healthy and all that involves. I have some pictures that I want to post from Kaidence's first day of Sunbeams. She came home the first day with her crown that she made that read "I am A Child of God"....... how true that is little girl. I cant believe this day has come. She turns 3 next month and starts preschool in the fall. Wow!!!!! I didn't plan this far ahead.

Kaidence will hopefully be going in first thing on Monday to have the stent placed in her LPA. However, to keep with the tradition of cath lab.......Kaidence yet again has a cough and runny nose. We would like to have this done before her Birthday on the 23rd. So we are praying that if it is meant that Kaidence have this procedure on Monday that things will clear up. You hate to be sent home from same day surgery when you leave for the hospital at 5AM. Also FYI, if your child goes into the sameday surgery registration and the NP decides that for some reason the procedure cannot be done that day due to cough, ear infection or whatever........you get stuck with a $200-300 bill that will NOT be covered by insurance. The hospital told me it was new protocol and they now make you sign a paper regarding it. Just thought that all of our buddies that are also frequent fliers would like to know.

Life is good here and we hope that same is with everyone. We have some special friends that need some extra prayers at this time. Please pray for Ellie and Jude.

NO HEART CATH TOMORROW

2009-12-27T21:33:00.000-07:00

I only have a second to post, but I have had people ask about Kaidence's heart cath tomorrow to place her stent. It will NOT be happening tomorrow. She has had a junky cough and her lungs are very wheezy. We have her on breathing treatments and steroids, so hopefully we can reschedule soon. Too bad we will now miss having 100% covered by insurance. We have hit catastrophic until December 31, but it January it will start all over again. That is ok though, either way it will go toward our out of pocket. We are just SOOOOO thankful that we do have good health insurance. That itself is a blessing. I hope that everyone had a great Christmas, I will update when I have some time.

2 Years Tomorrow!!!

2009-12-22T09:33:00.001-07:00

Today, I cannot stop thinking about Kaidence's sweet Donor family. In fact, I think of them all of the time on a daily basis. My prayers are with them as always, but especially today. It was 2 years ago tonight that we got "the call" that Kaidence would have a second chance at life. Therefore, it was 2 years ago tonight that they said goodbye to their little boy. It will be 2 years tomorrow, December 23rd in the early morning since Kaidence was given her beautiful new heart. What an amazing gift to be given, especially at Christmas time. However, I cannot help but wonder if it made it that much harder to lose their child just days before Christmas. With this in my heart it makes this time of year a very bitter sweet time of year. I am so thankful for them and their gift to us.

Little Miss K, Tomorrow is your 2nd Heart Birthday. The last 2 1/2 years have been crazy, heartbreaking, miraculous, humbling, faith promoting and so much more. Today you are happy, thriving, into everything and feeling very independent. You have come so far and had so many wonderful people caring for you. You have been loved and cared for by so many up at the hospital, in your family, ward family and many prayers have been given in your behalf from all around the world. To all of these people, we are grateful for you. To all of our friends in the "Heart World" Thank you for sharing your stories, your love, support......we know that we are never alone and that others are walking similar paths.

Little Miss K, Thank You for your journey and for teaching us and opening our eyes to life. We love you and are glad that you are ours. May your new heart continue to grow and beat within you for many, many, many more years to come. May it be at home within you and may you continue to follow the plan that your Heavenly Father has for you. You have been blessed. Happy Heart Birthday Tomorrow!

To all of our cherished friends and family, Thank You, you are amazing. Have a WONDERFUL and VERY MERRY CHRISTMAS!!!

FYI: Kaidence will go in on December 28th to have the stent placed in her left pulmonary artery and will hopefully only have to stay the night.

A NEW HEART FOR MADISON......AND A FLOOD OF EMOTIONS!

2009-12-04T14:37:00.000-07:00

It is amazing that every time I hear of someone getting the second chance at life, how it jut floods my heart with so many tender and sweet emotions. It is almost like it personally happens to me all over again. Our little friend Madison is getting her new heart this afternoon. I still am amazed by those that give our children this gift.

Kaidence, Camden and I were able to "personally" meet her parents and twin brother on Thursday. We know them through their blog. What a kind family and how blessed they are to get a new heart for their little girl so quickly. Please keep them in your prayers this day, as well as those that lost their little angel.

Thank you to all of you that read this who have given this gift to another. Our hearts ache for you. Please know that you have given the most amazing gift. As a mom of a little girl who is alive because of another family like you, I can tell you how words are so inadequate for what you have given. It is hard to express because the most sincere and heart felt 'Thank You' just doesn't seem like enough. It will never be enough. But know that every time my little girl gets to do something like riding a tricycle, laughing with her brothers and celebrating another birthday.... You are ALWAYS in our hearts! My heart is full of such love and gratitude for you, although we have never met.
Each night as I listen to the heart of an angel beating within my daughter I am humbled, blessed and amazed by your gift.

I NEED YOUR OPINION PLEASE-ASAP.

2009-12-01T10:54:00.000-07:00

I need some opinions and figured that this would be a great place to turn. Our family car decided that it could no longer drive Sunday evening on the side of I-15. Needless to say we are in a rush to sell Mikes Dodge Dakota so that we can purchase another family car. We have been looking at Toyota Sienna's. My question for all of you is how well do they do in the snow. I have always driven a 4 wheel drive vehicle and so the thought of a front wheel drive scares me a little. Also, we have the WORST driveway in the winter. I have to use 4 wheel drive to get in it when it snows. It is always pure ice. I have been told that front wheel drive with snow tires should do the job, but will it really? Will it work well on those beautiful mornings when a storm hits and I have to be to PCMC early in the morning with yucky roads? I know that the Sienna's do come with AWD, but they are so hard to find and we are buying used. We have found one of both. And just wanted to know if those that own this vehicle (I think maybe 3/4 of Utah) has had good luck with the Front wheel drive. Will you respond and let me know asap, since we need a car badly.

It is between a 2006 Front wheel Drive 40,000 miles
or
A 2004 ALL Wheel Drive 65,000 miles. (is 65,000 a lot of miles for Toyota?)

OVER THE RIVER AND THROUGH THE WOODS!

2009-11-26T08:50:00.000-07:00

Over the river and through the woods to Kaidence's house we go! We are out of here!!!! Her CRP is still not back,but her white count has dropped dramatically. We will be back on Saturday for labs. Kaidence did very well last night and today is into everything. She seems to feel so much better and is back to her spunky self.

I have got to get packed up and out of here because I have some baking to get done! I will update another post later.

We are so grateful to get to go home today. We have been given so much. Like always prayer of gratitude and peace is in our heart this day for the sweet family that gave Kaidence her second chance at life. Happy Thanksgiving to you all!

THE PLAN - AS OF TONIGHT

2009-11-25T20:33:00.000-07:00

Kaidence looks so much better tonight. In fact, she is playing in the closet in her room. She is going pee in the potty again and has taken a little milk this afternoon. The one thing my daughter wants to eat today are Salt and Vinegar Potato chips, her favorite. Can you believe she picked that over M&M's?

Kaidence got another chest x-ray this afternoon and it looks worse than it did yesterday. They were expecting this because of how dehydrated she was yesterday. But, today now that she is more hydrated, she has more fluid in her lungs. Her prograf is still high this evening and so we are holding another dose to try to drop it even more.

The concern this evening is that her CRP (body's inflammation response) is 21. MUCH too HIGH, however we have had much higher in the past. If this number does not decrease by morning, we will not be home for Thanksgiving and she will be restarted on IV antibiotics. Today we lost 3 IV's and no longer have access for IV meds. Because of this they have started her on a very heavy oral antibiotic dose.

So all in all, our goal is to get that CRP down and get home. Missing Thanksgiving does not diminish what the holiday is all about. It is about Family, Giving Thanks and Being Grateful and I have so much to be Thankful for. So Happy Thanksgiving to you all and know that you are one of those things that I give Thanks for.

HOSPITAL UPDATE#1

2009-11-25T11:18:00.000-07:00

Kaidence had a good night. In fact, I think it was the best night that we have both had since last Thursday. That says a lot for hospital sleep. This morning she still is not producing much urine for the amount of fluids that she has been given, however that seems to be improving slowly. Her numbers for kidney function look much better today and will hopefully continue that way. That is a BIG relief for us. Also, her white count is down from 22 to 18 this morning, so the antibiotics are doing there job and hopefully it will be back to normal soon.

Kaidence held down some feeds last night and this morning wanted some yogurt. Her oral aversions have come back, but always do when she has been sick. It is almost as though she has to learn to trust herself swallowing again. She wants to eat the food, but is too afraid to swallow it. She looks so much better today. She is sitting up and has taken over the rocking chair and food tray in the room. She insist that the food tray stays in front of her, like a sense of Independence being able to feed herself when wanted.

Our plan for today includes playing a little hospital BINGO, getting a chest x-ray and waiting for our blood culture results. Thanks for all of your prayers. If things continue well, we may make it home just in time for dinner tomorrow. I will post a little later today.

SWINE FLU STRIKES AGAIN, BUT THIS TIME WITH PNEUMONIA

2009-11-24T20:44:00.000-07:00

Well, I am posting this from the "house upon the hill". Kaidence has been sick since Saturday with fevers, headache, cough and vomiting. I was told that we would not worry too much since she already had swine flu and should not get it again, BUT surprise She has H1N1 AGAIN and Pneumonia. The VRP panel the we had done on Sunday night came back negative for the flu, but then as I was siting in the ER today they informed me that it had been sent away and came back positive.

So kaidence's White count is 22 (not good for the immunosuppressed). Also her kidney numbers were a mess, we are hoping only because of dehydration. Her Prograf level keeps increasing even though we are trying to decrease it (it always increases when kaidence gets sick). She is almost 2 years post transplant and so they like her levels between 5 and 8. Today they were 18. This can also add to the nausea and headaches. I haven't slept since Thursday night and am feeling it a little tonight. Last night was the roughest, I think I worried and prayed for a wet diaper all night. The moment Kaidence would get 10cc's in her tummy, it was back up within a minute. I called cardiology this morning at 5 AM and left a message for the transplant coordinator to call me first thing. I wanted to bring her in for fluids and labs. I am so glad that I did.

We met with a doctor from 'Infectious Disease' that knows Kaidence all to well. He explained that when a immunosuppressed person gets H1N1 they get the initial virus for about 3 days and then it quickly clears, which Kaidence's did. They do well for a awhile and then 2-4 weeks after the initial infection they get sick again. This time usually with a bacteria infection like pneumonia as a secondary infection in addition to the H1N1 symptoms again. They aren't sure if when they get the second round of the H1N1 if the virus is alive or dead. The test only shows that it is positive for the H1N1 DNA. Reports seem to show that those who are immunosuppressed can shed the virus up to 21 days. That is a couple of weeks longer than those with a healthy immune system. We got a good laugh, because for once Kaidence actually did something that followed what they call "a text book case". She is usually writing her own book.

Anyhow, it looks as though I may get to partake of yet another lovely Thanksgiving Dinner here at the hospital. But hey, the Rainbow Cafe throws in free dessert and drink as and added bonus for Thanksgiving.

Tomorrow we will take more labs and hope that her kidney function is recovering and that she can keep things down. She is still very dehydrated this evening. They currently started Tamiflu again as well as two antibiotics for her pneumonia in her left lung.

We are heading to bed and praying that tomorrow brings much improvement.

MRI AND ARM RESULTS

2009-11-23T17:45:00.000-07:00

Today was the day for Kaidence's MRI. We weren't too sure that we would make the appointment anyhow because Kaidence has been sick again since Saturday with fevers, coughs and vomiting. However, they wanted it done anyhow. It turns out that she has to go back in to place a stint in her LPA. I am bummed that we just didn't do it on Thursday, but it is better to know exactly what we are looking at and if it's was really needed. Dr. Gray said that it is a pretty tricky place to place a stint, because of where the kink is and its angle. It turns out that her right lung gets about 70% of the blood and the left lung is getting about 30%. This next time I am not so sure that Kaidence will be as cooperative. She knows what's going on and is a little unhappy about her bruised groin. We are hoping to do that around the 2nd week in December. I am nervous all over again.

Also, I am soooooo HAPPY to report that Kaidence's arm has regained all of its function. I am so relieved. What a blessing. Thursday night when her arm was not working at all she went to get off the couch but fell face first and got a bloody nose because her arm could not hold her. It would drag as she walked, but now looks as though nothing has happened.

Anyhow, that is our update. Thanks for checking in on our little family and Miss K.

Some GREAT news and a little not so great news!

2009-11-19T20:01:00.001-07:00

Well, first I must give the good news first........NO REJECTION. Zero's all the way across the board. Part of me still can't believe it. Her AMR also looked better than last time. We are overwhelmed with happiness from that news.

Next part, I noticed that Kaidence was not really moving her right arm much after the cath. She also would say "owie" if I touched it. Didn't think much of it because she also had the blood pressure cuff on it. However, as the day went on she was still not moving it. I went to give her a sippy and noticed that she could not grasp her cup. She cant bend her arm. Almost like her muscles aren't working. She can twist her wrist and move her arm at the shoulder, but cannot bend her arm. It just hangs straight. We aren't sure what happened. She has no other symptoms of stroke or blood clot at the time. Dr Gray said it is very rare (should be my first sign) but sometimes patients can get what is called a brachial plexis (sp?) injury. Basically because in the cath lab they have their arms raised above their head for a long amount of time (today was longer then expected) it stretches the nerves and damages them. Most patients will recover their arm function, but it may take awhile and therapy. If she has not regained more function on Monday, Cardiology will schedule an appointment with neurology. Kaidence would not be Kaidence without some sort of drama thrown into the groove of things. Hopefully she will tolerate her arm issue ok. Right now I can tell that she gets frustrated at times. She can't climb onto things any longer, catch herself when she falls, get herself her sippy to her mouth, sit herself up from laying or do her sign language. We are praying that this will resolve itself in a timely manner before she gets into the habit of not using that arm at all. She is a happy little stinker tonight just to be home. In fact she talked and sang to herself the whole way home.

We are trying to focus on the amazing news from her biopsy. We have been so blessed and the Lord will continue to bless Kaidence and find a way to provide for her what is needed. Monday we will have results as to whether a stint needs to be placed and we will maybe have a better idea of what her arm will do. Thank you for all of your prayers. I will update if anything changes.

ALL FINISHED!

2009-11-19T12:53:00.000-07:00

Kaidence is finished. Everything looked great except for the LPA. It is not narrowing , but kinked instead. It is most likely because of how her heart is sitting in her chest. We will be back on Monday for a CT or MRI and that will tell us how much blood is getting through to her left lung. It is obvious that the LPA is much smaller than the RPA. In fact, it is about half the size. However, everything still looks as though it was caught early enough to fix.

I have not spoken with transplant team yet, but Dr. Gray said that besides the kink in the LPA that her heart looked PERFECT! Not a day goes by that I am not amazed by the journey that we have had and that somebody gave us this amazing chance at life. It is amazing to see pictures of this heart that beats within my daughter. When they transplanted Kaidence, they hooked up her new heart and it started beating on its own without needing to be shocked or anything. I truly believe that is at home within Kaidence for this time.

We will keep you posted on the biopsy results and all the other many numbers that they look for. Thank You for your prayers. We are so grateful for such an amazing support group.

Cath Update #2

2009-11-19T11:28:00.001-07:00

We still have not heard anymore. This 2-3 hour cath has just hit the 4 hour mark. I am starting to freak out a little. I keep thinking that maybe my pager is broken, even though I know it is not. I always thought as well when she was waiting for her heart. I am trying to keep myself busy, but my mind has a different agenda. I cant stop wondering what is going on and if everything has gone ok with the ballooning of the artery. I keep thinking that I should hear from them any moment. Just thought that I would update.

Update to cath #1

2009-11-19T10:09:00.000-07:00

Kaidence's cardiologist just came by to let us know that Kaidence is dong well. They think that there is narrowing of the Left Pulmonary Artery (LPA). However, we have had this discussion before. In fact 6 months after tx, we sent Kaidence to the cath with the idea that a stint would be placed at that time. Dr. Cowley felt that it was just the angle of her artery and that blood flow was fine and therefore found no need to place the stint. Dr. Gray was wanting to place a stint after getting a look at things this morning. They will balloon her artery in the cath and see what happens. If things look stable at the point Kaidence's cardiologist wants to wait and do a MRI of her lungs and heart that will show the blood flow to both. If this looks bad, then we will go into another cath to have the stint placed. It would be one more cath, but better than having something placed that is not needed.

(FYI - a stint opens up the artery and allows more blood flow. If the artery goes without the appropriate amount of flow then the vessels of that artery will die off and cause serious problems).

She still is not finished and we are anxious to see her. Still keeping a prayer in our hearts.

WE MADE IT TO THE CATH LAB!!!!

2009-11-19T07:55:00.000-07:00

We officially made it into the cath lab around 7:30. She woke up with a little cough this morning, but they feel that she sounds and looks pretty good. Kaidence was a little unsure of things, but she insisted on walking herself into the Cath lab and went and stood right next to the table. Everybody seemed surprised at how big she had gotten. She chose bubble gum for her flavor of sleepy juice, but was a little unsure as to why she didn't get a 'real' piece of gum. They let me stay in the room with her as they put her to sleep. I was able to help hold her and just talk with her as she drifted off to sleep. She only cried for a minute before she was snoring away.

They told us to expect 3 hours because they were doing a full cath on her. I don't ever recall her having a full cath since her initial 6 month post transplant. They will use both legs as access to a artery and a vein. They will take the biopsies and then inject dye into the coronary arteries to look for disease and narrowing. I am a little worried as to how the coronaries will look due to the fact that last cath she came back showing AMR antibodies. They seem to think that being positive for the AMR antibodies leads to a higher chance of disease of the arteries. Time will tell and I am trying to not worry over things I cannot control. Please keep my little lady in your prayers today. I will update again as soon as I get any info.

Cath Lab - take 3!

2009-11-18T18:49:00.000-07:00

So about 4:30 this afternoon the cath lab called to cancel Kaidence's appointment for the 1st of December. They had another heart kiddo that needed the spot. I told them I understood because I am sure that we have caused others to reschedule in the past when Kaidence needed things done.

Well after trying to find another date to reschedule, she said that they could do her cath tomorrow morning. I asked her to double and triple check with same day surgery to be sure that they were really ok with it. She called and they told her that 4 weeks post H1N1 was only for those that had the illness severely enough to be hospitalized. So we are apparently good to go for the morning, first case.

Please keep Kaidence and the doctors in your prayers. I have been a little more paranoid about her airway holding up after the tonsil episode, but I think that was an isolated episode due to the swelling, cough and too much Lortab.

I am also worried about her heart valves after the other cath. Once you have one bad cath experience it seems to make you a little more paranoid for the others. I am sure that all will be well. She knows that she gets to go to the hospital in the morning. she just tilted her head and said "Oh no" in her soft, raspy voice. We look forward to checking this off our Holiday list of 'things to do'.

Thank You for your prayers. They bring so much comfort, peace and guidance.

CATH LAB = NO GO!

2009-11-11T16:35:00.001-07:00

Ok, they once again canceled her cath. I want to just sit and cry (OK, I already have). They are too afraid to do her because she had H1N1. I understand the concern, but people you also have to go by the patients clinical status, not just a diagnosis of something that she had in the past. Kaidence has NO COUGH, NO RUNNY NOSE, NO FEVER...........NOTHING!!! SHE IS EVEN EATING! She has been well for a week now. I can't guarantee that she will be this healthy as the winter goes on. The ironic thing is that this would be the healthiest that Kaidence has EVER been for a heart cath. Cardiology even pleaded our case but the anesthesiologist said no way because she had the swine flu. I understand they are only trying to protect our children and I do appreciate that. It is just one of those black and white things without seeing any of the color in between. Next time we will request Chuck P as our anesthesiologist. So our date is being moved to December. I am really praying for no rejection so that we are not in the hospital again for Christmas or on strict house arrest Christmas Day.

Worse things have happened in life and my no means is this a huge deal. Just a big disappointment and a longer wait for the unknown. I am grateful that Kaidence IS so healthy. I just wish others would listen and know that I would NEVER even chance for a moment putting Kaidence in any danger.

Thanks for letting me vent!

GOODBYE H1N1.......IT WAS FUN GETTING TO KNOW YA!

2009-11-08T11:33:00.001-07:00

The Swine Flu will hopefully not be seen at our home ever again. Kaidence is the only one that got the darn bug (knocking on wood of course). Monday was when it started, and quickly at that. Tuesday was another day full of vomiting, high fevers 103-104.7, shakes, coughing.....all the good stuff. Tuesday night was.....LOOOOOOONG to say the least. That was a rough night for her and seems to be when everything really peeked. Wednesday the vomiting decreased greatly and so did the fevers. When she got them they were still high, but she only had two that day (compared to non-stop the days before) and they were manageable with Tylenol for once. All of these days she just layed and cried, while pointing to her little forehead. It hurt. We returned to the Pediatrician's office Wednesday to check her lungs for pneumonia and they were very pleased with how well she had done. Everything sounded great. Wednesday afternoon was her last fever and she has not had one since. It took a couple of days past that to get over the headache and work her feeds back up to full, but we are getting there. Just as quickly as the illness came on, it left. But it sure did a good job of wiping her out. However, Kaidence is dancing all over the house today & asking for candy. This little thing is always dancing through the house. I am amazed that she did so well. I almost cried when the doctor told me she had H1N1. I think that getting the Tamiflu in her system so quickly after the fevers started played a huge part in that, even though it made her stomach sicker. Thank You for all you prayers, we know that plays the biggest role of all.

Hopefully we can all stay well and my cute little stinker boys will keep healthy. We still need the second doses of the H1N1 vaccine for all the kids, maybe next week if her cath goes well. Her cath has been rescheduled sooner than we thought possible, because of how quickly she got over her illness. It is for this Thursday morning. Wish us luck and please keep Kaidence in your prayers next Thursday!

H1N1...........IT FOUND US!!!

2009-11-03T12:25:00.000-07:00

Yes, my fear has become a reality.............
Miss K has been diagnosed with HINI, yes the Swine Flu. How the heck she got this I have NO IDEA. We have someone that watches her every Sunday so that we can go to pat of church with the boys. We haven't been anywhere that she has not been in her stroller with her mask on and my poor boys change their shirts the moment they walk in the door from school and sanitize their hands. Oh well, I guess even with being so careful and all the Avagard that I carry with me you can't always protect them from everything. She has only had her first dose of the vaccine for the H1N1, the second dose is due this Saturday. Her symptoms came on very quickly (within an hour). I took her into her doctors office and they swabbed her and said that the test hadn't finished running but that it was already showing positive. She has a fever, head hurts, throat hurts (all determined by her pointing and crying). She has a cough and has been pretty nauseated. We put her on Tamiflu last night but that makes her tummy worse. She lays around a lot and does not have much energy at all. She looks pretty pale and has those bloodshot fever eyes. I feel bad that she feels so bad. I am having a hard time timing all her heart meds around the spells of nausea. If we can at least keep them in for 30 minutes then we are good to go. I have hard a hard time keeping her fever and body aches in check with only Tylenol, because she cant have the Ibuprofen. On a positive, note I have a little cuddle bug and I love it!

Needless to say that Kaidence's Yearly Heart Biopsy that was scheduled for this Friday has been canceled for a few weeks. Big sigh, you know how you build yourself up for it. I just wanted to get it over with before the Holiday's incase they did find rejection like last year. That is why we do it every November even though she was transplanted in December. If they do find rejection then we have to do a steroid taper and she once again becomes very immunosuppressed and cant be around anyone. I am hoping that when the Cath does happen, that all will be well so that we can spend the Holiday's with our family.

Maybe this is just how things are supposed to work out. I am just so happy that she has done so well and we have come so far. We have been blessed, I see it more and more everyday and I am so grateful for all that Heavenly Father has given us. I cannot help but feel so blessed and happy.
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SIDENOTE:
I am almost finished loading all of our summer pictures and will get a very looooong post in sometime soon. Also, I know that I have not yet posted about her Make A Wish party but I ended up passing 3 kidney stones that night and was in bed the whole week after sick. I will post about it soon, however pictures of my beautiful kidney stones will not be included, I know you are all sad about that one. And yes, it was worse than child birth without the epidural ( mine didn't work at all with K). And we will just leave it at that!

Thanks for checking in on us, we will keep you posted!