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.