WE FINALLY HAVE SOME ANSWERS!!!

So finally, after almost exactly a year later we have answers as to Kaidence's Cardiomyopathy. Kaidence became ill July 2007 and we have not had any definite answers.as to what happened or caused it. I have asked the cardiologist many times in hopes of finding out what pathology found from her old heart after she was transplanted with her new one. It was sent out and we had hoped to find some answers. Cardiology would then in turn call her genetics doctor and was told that they have not heard any results. So Kaidence's WONDERFUL pediatrician decided to make a phone call to pathology. Apparently the results have been available since December of last year. They had the results 3 days after her transplant.

RESULTS:

Kaidence's old heart showed NO evidence of a "Glycogen Storage Disease" and NO obvious eveidence that her Cardiomyopathy is genetically linked.

I am so excited about the results and feel so blessed once again to finally have answers. For the last year and a half I have stressed and worried about my boys. Would they get the Cardiomyopathy? Is it genetic? Should we have more kids? I just had echo's done because we still had no answers. I decided I would rather be out the money for the boys echos and have the peace of mind that I needed. How grateful I am that we were once again blessed. I finally feel that this offers some closer for us.

If you remember back to the days after the "Berlin Heart" you will remember that they thought Kaidence had a "Glycogen Storage Disease" because they found Glycogen in a piece of her heart. They told me that they could not waste a heart on Kaidence because if she did have this disease, she would wastes away and eventually die. It would be more ethical to give the heart to a child that would have a chance at a healthy, normal life. They then took her off the transplant list once again (I was devastated). They cut her thigh and took a piece of muscle from her leg and ran tests on it. The tests took days and I could not sleep. What was I going to do? How was I going to pull the plug on my healthy baby? The only thing keeping her alive at this point was a machine that was plugged into the wall. The test from her thigh came back showing that she did have glycogen in her muscle but not severely enough to keep her from getting a new heart. That was one of the best days ever. I remember my mom took me to "Hires" and I had a Coke, Big H and Onion rings. I hadn't eaten in days and finally felt like a weight had been lifted from me. I once again had hope. We now think that the Glycogen had presented itself in her heart and other muscles in her body because she was so sick. Her body was shutting down and unable to metabolize what it needed to, so it was just building up.

To see these results now and to think that Kaidence was taken off the list, possibly forever for a disease that she never had, makes my stomach sick. Once again, I have no doubt that the Lord does have his hands in everything.

Sorry, I know that how Kaidence got sick has made many very nervous and paranoid for their own families and I can't blame them. But you have to remeber that her illness was a rare thing. Life still has to go on. All we can do is be respectful to others when our own kids are sick and keep them away and hope that others will do the same.

So Kaidence did get the Cardiomyopathy from whatever stomach bug our family had. I cannot sit and play the "what if game" as to why she got sick. I cannot place the blame on anyone or anything. It won't make things better and I have no doubt in my mind that this is part of Kaidence's earthly mission. Too many lives have been touched for the good, including our own.

DOES KAIDENCE'S LIKE SANTA????

I am proud to announce that........Kaidence has gained weight. On December 4th she weighed in at 20lbs 8oz. On Friday December 12th she weighed in at 23lbs 14oz. That's over 3 pounds in 9 days. Yeah!!!!!!!!! I started supplementing her feeds with Duocal. It is a healthy way to increase calories without using all of the cream cheeses and other stuff that I really don't want in Kaidence's arteries. The whole reason for our Cardiology visit on Friday was to get echo's for the boys. Because we don't have any reason for Kaidence's Cardiomyopathy other than the stomach virus we got, the doctors wanted to be sure that all looked well with the boys hearts. Let me tell you, I was so afraid that something was going to be wrong with one of the boys. I feel so blessed to say that all looks well with their hearts and we will recheck them both in 5 years. What a great Christmas gift to me.

Also before I forget the "Standard Examiner" came out today for a interview and will be doing a follow up article in the paper tomorrow morning if any are interested.

We also attended our ward Christmas party with our WHOLE family. The boys did the nativity and "C" was the only 'wiseman' that was laying on his stomach half the time. "M" was very reverent and made me proud. We also had a special visitor. Let me just say that Kaidence was NOT a fan of Santa (see picture above). I have never seen my girl so upset. I have also never heard her cry so loud (ok, still not very loud compared to most kids but loud for her). Seriously though, she handles getting IV'S placed better than she handled just seeing Santa. She didn't even make it to his lap, she just started screaming the moment I started walking toward him. It was after all her first "Santa" experience. The boys loved seeing Santa. They must think Santa is pretty amazing because their lists keep changing everyday.

Also, to whomever it was that left the Baby Jesus and the beautiful cradle on our door step we thank you. What a precious gift. The kids love looking at it and all had to take turns holding the baby Jesus before going to bed. The music on the CD that you sent with it was so fitting. Thank You for thinking of us. We have it carefully placed in our home as a reminder for the Season. It has brought a beautiful spirit into our home. Thank You. What an amazing and perfect gift. We will treasure it always.

THE HOLIDAYS ARE HERE!

I thought that it was about time that I posted again. Life has been busy with .....well, just life. This picture makes me laugh. It is one that I hade from the Childrens Miracle Network. This laptop doesnt have any pictures loaded on it besides this one. Doesn't "M" looks so grumpy? The family is doing well. Mike is still in a brace and has been so anxious to get back to work. It was fun having him home while it lasted but I got NOTHING done but it was nice having him around. The boys are so excited for Santa to come. "C" keeps coming up with these weird imagination things that he wants for Christmas and when I tell him that maybe Santa's workshop doesn't have such a thing he reassures me that Santa is magic and can make anything. Let's hope!

Thanksgiving was wonderful being home. We stayed home because Kaidence was still on the extra meds from the rejection. It was nice to have a quiet and calm Thanksgiving. We have been so blessed and have so much to give thanks for. Kaidence of course ate nothing of the wonderful meal, but she sat next to us in her high chair. And then the next day I braved the crowds with my mom, sister and her husband. Some people take it much to serious, but they always guarantee you a good laugh. I must add how fun it was shopping for the kids this year. Last year I refused to buy Kaidence anything that she could not use at the moment while lying in her hospital bed. I was so afraid of having it around my house as a reminder if something did happen to her. And the boys, well lets just say I grew up with all sister and so the boy thing takes a little more imagination for me but I think I did a pretty good job this year. Oh how I love my cute kids. They keep me laughing.....however, sometimes I have a "mommy moment" and it takes me a day before I can laugh about it. I am so grateful for every moment that I have my kids. We never know when that moment could be the last.

Kaidence is into everything! She loves to wear my shoes around, eat her Lip Smacker chap stick and tear all of the Kitchen towels out of the drawer. She is all girl, you should see how proud she is when you put her chap stick on her lips. I need to get her some of those dress up shoes. She is also in the phase of taking off her diaper while "napping" and going potty (1&2) in her bed....yeah for me! I thought I was maybe going to get one child that did not find fascination with that. She had Cardiology last week and was given the ok to go off the extra "rejection meds" ....very exciting. She has ear infections currently but with a high pain tolerance seems to be doing ok. She loves the Alfredo pasta from Costco we discovered with thanks to Amy and we figure it should be fattening enough. She has lost weight and so we are once again having to count every drop that child consumes and count the calories. She is now getting 3-4 feeds consisting of Pediasure, milk and a packet of Duocal bringing a 10 oz feed to 325 calories. My thought is eating that much, who would be hungry?????

We have been given the ok by one doctor to go out and enjoy some of the festivities this year as long as the crowds aren't huge. I can take kaidence to the store or mall every now and then and possibly to sacrament meeting only. We would really love to at least get to sacrament meeting as a family and so I think we will try sitting in the "cry room" that our building has since it really isn't used as a "cry room." It was that or sit in the hall, but I think that the boys would not do well "listening" to sacrament meeting out in the hall and it does make it hard to feel the spirit. We will try this and see how it goes and hopefully we can keep her healthy while still living somewhat normal. If you do happen to see us out and about please stay away if you are not feeling well. The doctor said that it is the hands on contact with Kaidence that has the highest chance of spreading germs and making her sick. We love seeing and talking with you all. We may even go to our ward party this weekend. Kaidence has never seen Santa and maybe if we can make it to the front of the line she can sit on his lap before all of the other kids do. I remember how incomplete it felt last year taking the boys to the party without her.

How wonderful it has been this year to spend the Holidays at our house with ALL of our family. I love this time of year. I am so grateful to our donor family for what they gave to our family, Kaidence's "Angel Heart." I am amazed at how far that we have come and give thanks everyday to my Father in Heaven for the miracles, guidance and blessings that he has given to our family and I also give thanks to all of you for your part in our family's "Journey of Faith."

KAIDENCE LOVES HER BOOTS!

Well I thought that it was about time that I update. Kaidence has been doing great. She is still on her extra immunosuppression for the rejection but almost done with the taper. She is a busy little girl and a very quick mover. Cardiology on Thursday went well and her echo looks great. She now says "owie" and "no-no". The steroids have helped increase her appetite but I am now finding as we are lowering the doses, that she is no longer wanting to eat as much ( NOT GOOD).
This picture is Kaidence sitting on the "time-out"bench. Notice her pink boots and fancy socks. My cousin gave her these boots and someone at the hospital made the socks for her. She LOVES her boots and always seems to be wearing them.


Today Mike had his surgery on his arm and everything went well. His doctor suggested that he get a nerve block for his arm. The doctor said this is the most painful surgery that he performs. Mike didn't want it but I was able to talk him into it. I said "they are drilling a hole in your bone, take the nerve block!" When Mike came out of surgery he said "poor sissy and all that she has had to go through." I would tell you all of the funny things that he was saying once the anatheseologist (SP????) gave him some good stuff but that would just be rude (but funny).


For the BYU game we went to my sisters house. Yes, I let Camden wear a Mohawk for the BYU game. I also told him to never ask again to wear one. I hoped it would make the Y a little more feisty, didn't work. All I have to say is the win or lose, it was much better than listening to the game from Kaidence's PICU hospital room last year.

HEART HISTORY!

So those of you in our ward have seen that my children love walking along a brick wall at our ward building. They usually walk to the end and then jump to whoever is catching them (I have M's torn church pants to prove it.) Well, this seems like a ritual every Sunday for my kids and last Sunday was no exception. However, Mike was not ready to catch C when he decided to jump but was able to catch him anyhow. But.......he then felt a rip and curl in his arm. So needless to Mike ripped away his muscle and tendons. He will be having surgery in about one and a half weeks and out of commission just in time for shoveling season. This could however be good for me because I do need to get back into shape. Ya right, I just told him to go and buy a lot of "ice melt."

Also the verdict is in on Kaidence's "kitty box" disease.................NEGATIVE!!!!!!! I am so excited that she does not have this. Let this be a lesson that it never hurts to double check. I am so relieved. I was also finally able to talk with her cardiologist and she seems to think that Kaidence is still doing very well. The AMR rejection has not been studied much because it was never tested for until recently. However, they did say that we were lucky in a sense that the study and push for studying this form of rejection stems from right here in Utah. So they really don't know exactly what the finding truly means, is it more likely to reoccur? How it is treated? They don't llnow, but people are starting to look into it. Hopefully we can keep it under control until they find more answers. They have seen a strong connection between AMR and Coronary Artery Disease. So far Kaidence's coronaries look fine.

I found this from baby Mia's blog and am copying them (I hope you don't mind Mimi). I found this info interesting and hopeful in regards to Kaidence's future. I cannot believe how far medicine has come over the years. When you think about it, the advances are truly amazing and it gives me hope knowing that more is learned every day in the world of transplants.

HISTORY
1964 - First transplant: A chimpanzee heart beat in a human body for 70 minutes.
1967 - The first human to human transplant, the man died from pneumonia 18 days later.
1984 - First successful heart transplant in a toddler: Two year old Elizabeth Craze became the youngest surviving heart transplant patient. (That is only 24 yrs of history and data!)
1995 - the first successful INFANT transplant happened at Loma Linda University. Eddie was just 4 days old.
1995 - The first year they were performing heart transplants for small children at Seattle Childrens. (That is only 13 yrs ago!)
As of the end of 2007, Tony Huesman is the world's longest living heart transplant patient, having survived for 29 yrs with a transplanted heart.
22 years after transplant, Dwight Kroening is the first heart recipient to finish an ironman competition.
There was actually a period of time in the 70's when research in the field slowed due to continued rejection. The improved life expectancy of patients after heart transplant is largely due to immunosuppressive drugs, which reduce the body's tendency to reject the new organ.

STATISTICS:
There were 2,192 heart transplants performed in the US in 2006, and 2,125 in 2005. Each year, thousands more adults would benefit from a heart transplant if more donated hearts were available. In the US, 74% of heart transplant patients are male (whoa.); 68% are white; 20% are ages 35-49 and 55% are ages 50-64.Survival Rate:
As of June 2007, the one-year survival rate was 85% for females; the three year survival rate was about 76%, and the five-year survival rate was 67%. These numbers have already improved. That is what is so encouraging about these numbers. They are old numbers. There is not enough history to go on for say a 25 yr expectancy, because 25 yrs ago, they didn't have near the knowledge they do today. The data that is being used to determine the 5 yr expectancy is 5 yrs old. There is new data today, and this Field is continually learning. Currently over 95,000 men, women and children await life-saving organ transplant (heart, lung, pancreas, kidneys, liver and intestines). Every organ and tissue donor can save and enhance the lives of up to 50 people. Green is the official organ donation awareness color- Go green.

The actual transplant
1. Is the entire heart transplanted? The back walls of the left and right atria will stay in the recipients body. You could say that it isn't an entire (intact) heart that is received. So, the surgeon actually cuts away the front part of the heart, leaving the back. Pretty wild.
2. How do they stop the heart? By injecting a chemical solution into the heart.
3. How do they fuse the breastbone? With steel wire. (you can see them on x-rays and feel them through Kaidence's skin)
4. How do they start the newly implanted heart? Warm blood begins to flow through the heart (by aid of the heart lung machine) and the warmth of the blood should "wake up" the heart and stimulate it to start beating. If this does not occur, it may be necessary to start the heart using an electric shock (defibrillation) kaidence's heart started on it's own and when they took out her old heart it kept beating for awhile in the bucket they placed it in. Once the blood is flowing through the new heart normally and without any leaks, the heart-lung machine is disconnected and the chest incision is closed
5. Do they always close the chest after heart transplant. No. It is actually uncommon to close the chest in an infant, due to swelling and the need to leave room for expansion. In an adult they do close the chest. Kaidence, had extra room in her chest cavity due to the large nature of her native heart, and therefor avoided a followup surgery to close her chest.

Amazing isn't it. Think of what the next 10 years will bring for us!!!!

Also here is her video link again for those of you asking, just click on the link below:
http://www.veoh.com/videos/v16023512zWE9r2Nj

ARE YOU KIDDING ME????

Kaidence continues to do great. I received a call from the hospital yesterday letting me know that a blood test that she had, tested positive for Toxoplasmosis. What in the world???? From that test they look at whether she is AGG or AGM. She tested positive for the AGM which means that she "currently" has this parasite active in her system. If this is truly the case, Kaidence should be severely ill right now. This parasite is rare in the US compared to other countries and it wouldn't affect anybody with a healthy immune system severely if at all. Symptoms for a healthy person are usually body aches, fever, sweating swollen lymph glands (possibly for months), If you even have symptoms. This parasite gets in the muscles and for an immunosuppressed person this has been known to infect the heart, liver, brain and eyes. It could put you in a comma, give brain damage, cause blindness, seizures etc. The cardiologist worries because we have now lowered her immune system (because of the rejection) so low that if she really does have this and it is active like the test says she should be very, very sick.

The other weird thing about this is that toxoplasmosis is what they call the "kitty litter box disease." Yep, this is the reason you should never change a litter box when pregnant. But WE DON'T HAVE CATS AND ARE NEVER AROUND THEM!!! It is from cats that eat a mouse/bird that is infected, then the parasite reproduces in the cats stomach and then you can guess the rest. It is only spread from their poop. So for you gardeners out there, they say to wear gloves because the parasite can live in your soil for over a year. One other way of getting this parasite is by eating raw or undercooked meats that had been previously infected and as you all know KAIDENCE'S REFUSES TO EAT ANYTHING unless it is vanilla Pediasure. Anyhow, this is frustrating and a dangerous thing for Kaidence to have with her immune system, if she really does have it. I am trying to keep upbeat but I can feel the weight from worry about the rejection and now this starting to weigh me down a little. I did not sleep well last night because I sat and tried to figure out where she would have picked this up from and how. We have been through a lot and MADE IT through a lot. I am taking her in tomorrow to be retested and I pray that this will be one less thing that we have to worry about. We try so hard to keep her healthy. Please keep her in your prayers. She once again has the doctors baffled.
I should also add that this CANNOT be transmitted human to human.

I am putting her video link on the right sidebar of the blog and will hopefully add her news stories and other article over there as well.....when I get to it.

KAIDENCE'S "CHILDREN'S MIRACLE NETWORK PGA TOUR" VIDEO!

This is the story that was on today's Chilrden's Miracle Network PGA tour. I have a 7 minute version that they did an amazing job with. I will put that on my blog when I get it. It is like this one, just not as detailed. However, I love this version as well. It makes me count my blessings.
The links below are to the same video, just different sites.

http://www.veoh.com/videos/v16023512zWE9r2Nj
http://www.youtube.com/watch?v=kNHYVBnT3Oo

This can video can also be found on the CMN network (Children's Miracle Network) as well. Just do a detailed google search. Enjoy!!!
Also, Kaidence is doing great so far with the rejection medication. Someone must have forgotton to tell her that her heart is in rejection. Nothing slows her down, she is still into everything and hasn't missed a beat!