Friday, November 14, 2008


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.

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.

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:

Wednesday, November 12, 2008


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.

Sunday, November 9, 2008


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.

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!