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!

KAIDENCE IS IN REJECTION!!!

So I am a little broken hearted to say that Kaidence is in rejection. In fact I think I am sick to my stomach a little. The hospital just called and seemed as surprised as we are to hear this news. The good news is that we will treat Kaidence on heavy steroids and meds at home and not the hospital. The bad news is that Kaidence will be defiantly off limits as we will now be very immunosuppressed once again. So we are back to no visitors while she is on all of these meds. I do have one small request for my boys sake. I do ask a favor that if everyone is healthy that you still involve my boys in things. I don't want them to feel the effects of Kaidence's condition with their social lives. I am not sure what to think and the thing that scares me most is that we had no symptoms. I worry that I will now forever be paranoid that we are in rejection and just not seeing the signs. However I must find a blessing in all things so here it goes: I feel blessed that Kaidence's body IS handling the rejection so well and not giving us any other problems and that we are in our HOME. Little kids can compensate very well.

So with that said I will try to explain the best I can how they determine rejection. They took 4 pieces of Kaidence's heart to biopsy. They test for different things but the main things they do is test at 1) a cellular level 2) a vascular level 3) they use an international number (I don't know much about this one). 4) look for AMR (antibody mediative reactions)
So on the first three they grade on a scale from 1-5. (1-2 = normal) (3-4=mild/moderate) (4-5=moderate/severe). Kaidence's results were 1)cellular =2. 2)vascular=3. 3)International=0.

The AMR test is either Positive or negative results. Last Biopsy at three months out Kaidence tested negative. Today she tested positive. This basically means according to how I was described, that Kaidence has these rejection antibodies against her heart in her muscle and blood stream.

WE are starting treatment tonight and like I said will have to stay away from everyone. I am sad but enjoyed the worry free time that we were blessed with while we could. This AMR is very treatable they say. It is just that we have to once again lower her immune system even more. The steroids are very hard on her body and make her cheeks chubby again and she will most likely not feel very well. It causes bad headaches, stomach problems and just makes her feel icky. Please pray for her to not feel awful. She is too little to have to feel this way. We still feel very blessed and continue to count our blessings during this little setback. Kaidence still looks great and clinically she is doing well also. WE may have to biopsy again soon. We will keep you posted.

HEART CATH IS DONE!!!

(I wasn't kidding about her loving the hospital. Look how happy she is in her ugly hospital PJ's)

First let me say Happy "Berlin Heart" Birthday. Today is PCMC's "VAD program's" 1st Birthday!!! A year ago today we were surrounded by doctors 24/7 (many, many, many doctors). Sorry for not posting sooner. I did not have my laptop with me and the hospital computers are very slow sometimes. Kaidence loved getting to ride once again in a hospital crib and I am not kidding about that. The second she saw her crib she was as happy as could be and they pushed her down the halls as she waved at everyone she passed and this was AFTER she had been given some Versed to make her drowsy, haha! She was so happy to be with her friends in her surrounding that Mike and I handed her over to the Cath lab people and she went with them and waved goodbye to us without a fight. At least she wasn't scared. Her procedure took about 2.5 hours, a little longer than the others so I was getting a little nervous but she did great. Her numbers all looked good and her echo after looked like they hadn't damaged anything this last time so that is great news. They took four pieces of her heart to check for rejection and a lot of blood. We will not know the results of the heart tissue until tomorrow. However, from some of her numbers they think that all is well. For those of you that have followed my blog from the beginning Will remember me talking about a BNP number. With Kaidence's sick heart it was extremely high, I think in the thousands was what her doctor said. The higher the number the worse the heart function, that is basically how they put it. For transplant patients they like the number below 100 but say they rarely see it on a transplant patient below 200. Well Kaidence's BNP was 43!!!!! Awesome news and the doctor seemed very happy and reassured about that.

(Kaidence coming out of surgery, she has a sore throat from be intubated so the sippy is just for looks. No drinking going on here.)

After the procedure the nurses just kept commenting on how great Kaidence looked and how good she was being. The other kids in the beds around us were all SCREAMING. Kaidence just laid there, looked around and listened to them like "this is nothing." Seriously, she did not cry once. She had to keep her leg flat and straight for 4 hours and when she would try to sit up I would tell her to lay back down and she would. She was a very good girl today and on her best behavior. Thank You all for your prayers and thank you to those that fasted with us. We are grateful for our blessings. As I looked at pictures of Kaidence's heart today I gave thanks and was once again amazed at the thought that someone gave us the heart of their cherished child so that they could save mine. I pray for that family everyday and hope that they will feel peace and come to know of the deepest gratitude that we have for them and their little boy.

(Kaidence getting ready to leave the hospital after her Cath lab.....See Ya next year and hopefully no sooner)

I will post again tomorrow after the results.

UPDATE... A LITTLE OF THIS AND THAT!

Quickly before I forget “Kaidence’s Story” will be playing on the Golf Channel this Sunday during the PGA Children’s Miracle Network Classic sponsored by WalMart Tournament. It will be on Sunday, 1-4pm EST. They don’t have a specific time, sorry. This is the new story they just finished doing. It will only be the short version but I am working on getting the files for the full length one on my blog.

So we have been super busy and a lot has been going on. First of all Mike and I celebrated our 10 year anniversary. Thank You Mike for the awesome surprise and getaway. It was much needed, I love you!!! Then Mike celebrated his Birthday and I just celebrated mine. Kaidence took her first whole jar of baby food ever (nothing since-see picture below) and she also started to crawl. Definitely prefers the bum scoot still. She has started walking along furniture and walls, just needs some self confidence and she'll be walking. She is starting to jabber more. She loves shoes and is always pulling them our of her closet to play with them. She is also a big fan of jewelery, just ask the ladies in my ward. She is always going from person to person to see what different things they are wearing.

The kids had a great Halloween. I volunteered at M's class for his party. He was Batman ( not the "new" Batman, the original. That was his request). C had a preschool party and he was a ninja turtle for that 2 hour block and then he was Spider Man and then Halloween night he was a Pirate. Silly kid. Kaidence wore the same costume as last year, she was a Fairy of Faith. It's amazing to compare her pictures from last year and this. Last Sunday the boys had their Primary Program and they did and excellent job with their parts and even had them memorized

So some of you may know that we have decided to move up Kaidence's heart biopsy (Cath Lab) to this Friday instead of During Christmas break. We don't want to chance any more Christmas' at the hospital. SOOOOO this Friday, November 7th Kaidence will go in and have her Cath. It is a little ironic to think that on this exact day a year before she was also in surgery receiving the "Berlin Heart". How far we have come and how blessed we feel. I am sure that all will go well but I am a little worried and nervous after what happened last time. If you would please remember Kaidence and her doctors in your prayers I would sincerely appreciate it. I will also be fasting that day if any would like to join in.

Also, we are moving back into the winter months and therefore will have to be extra careful and cautious about germs once again. So the same as before, if you or any one you have been around is sick please stay away if you happen to see Kaidence out and about. We will start to carry hand sanitizer with us once again and ask that if you come and see us that you please use it. You may not be seeing us all together at church because we will have to start taking turns so don't think we've gone MIA. One thing that we ask if possible is that if any of you will be having close contact with Kaidence or our family that you PLEASE get a flu shot. This is so important to Kaidence's well being. I cannot stress this enough. This request comes not only from us but from ALL of Kaidence's doctors. We will need to stay away from those that have not gotten one. I know some of you think that it does not work, but Influenza to Kaidence could be DEADLY. So if you are thinking about whether or not to get one, PLEASE think of Kaidence and all the others that need the same protection. Her immune system can't protect itself but getting herself and others vaccinated will help protect her. Thank you for your love and understanding. We will miss seeing you all as often. Summer was a great time to getaway and play while we could.

-This Picture makes me laugh. This is Mike being "in charge" of Kaidence at the cabin. If only I could take care the kids like this all day long.