Friday, November 7, 2008

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.

11 comments:

Randi said...

This news made my stomach drop. I am so sorry you are going through this.
Many Many Paryers are still coming your way for little Kaidence and her family. She is such a strong girl!!
God Bless, Randi
(long time blog follower)

paula said...

That just bites Shauny! But if anyone can get through this it's Kaidence. Your little girl is amazing and you know what so is her mom and her family. Kaidence and the whole family still remain in our prayers everyday. We love you so much and are here for you. Don't forget that. Did you ever see "Cast Away" with Tom Hanks? I love that part when he says "So now I know what I need to do. I have to keep breathing because tomorrow the sun will rise, who knows what the tide will bring." I know I'm a dork but I have always loved that part. I love you Shaun just hold on. You probably get sick of hearing it but I truly believe. Who knows what tomorrow holds. Love ya! -Paula

Simmons Family: said...

Kaidence looks fantastic and so grown up!! I am so sorry to hear that she is in rejection! We will be prayers that with the new meds and a healthy winter, she will turn around. It still doesn't change the fact that she has to feel icky and go through so much MORE!

We have recently been told that Owen will need a transplant. We wanted to come to Primary Children's but insurance won't cover it :(... bummer. So now we have to pick a hospital in CA or back east.

Do you mind if I email you with transplant questions? Moreso about the AFTER transplant stuff?

PRAYER from AZ!
Andrea
simmonsfamilyupdate.blogspot.com

Rachel said...

Your family is in my prayers!!! I'm so sorry to hear this latest news, but she's been through SO many miracles and is such a strong fighter. I am thinking of you!

P.S. Kaidence looked so cute on Halloween! :)

Dixie said...

Your family is in my prayers. I know that she will do well again. Your family is my inspiration. I am so proud of all of you. Let me know if I can do anything. Love, Aunt Dixie

Becca said...

I'm so sorry Shauntelle! What a shock that must have been. It's great that they can treat her at home and hopefully it will get under control quickly. Jared's chronic neutropenia is forcing us to be really careful right now too. We should get together and enjoy isolation together! Good luck and know that we are praying for all of you!
Rebecca

Jackie said...

Shauntelle I'm sooooooo Sorry My Heart is sick for you, The second I seen the word Rejection in your title my Heart dropped to the floor and I felt the tears start to well up in my eye's.
Little Kaidence has been through so much and all I want for her is to get the chance to be a Normal little girl with a brand new heart.
Not a day go by that I don't think of Kaidence and your family, when I talk of her to other I talk as if she were my own family.
I have a lot of love in my Heart for you and Kaidence so know that if you need anything Just ask and I will come running in a Heart beat:) Give Kaidence a hug for me and Email me day or Night even if it's Just for a shoulder to cry on.
Keep Ryan and I updated on as much as you can with Kaidence.

Michele said...

I am so sorry to hear of your latest setback!! Just when you think you are having a semi normal life then you get hit with another blow! It is such a hard thing to deal with. Kaidence is a little fighter, I know she will pull through this!! We will keep her in our prayers.

Michele said...

By the way, she looks so darling in her latest pictures. Her hair is getting so long. What a sweetheart.

Mimi said...

I saw the title to this blog from someone else's blog and my heart sank!!! I know nothing about rejection- nothing about the stress and trauma post transplant. I am so sorry this is happening. Hopefully with a good round of steroids she will be back where she was. There is so much I have to learn still... I didn't know any of that info- thanks for educating me.

You can do it little Kaidence!!

The Littles said...

I am so sorry this is happening to little Kaidence and you. No child should have to go through all this. George is always praying for Kaidence in his prayers and we will keep it that way. I hope the steroids go well, and her next biopsy is better. Please let me know if there is anything I can do for you. I will keep watching for updates, and we will keep you in our prayers.