Re-listed & CupCakes for Kaidence!!!!

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

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.........

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!

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!

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!

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!

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