Friday, August 12, 2011

A Bigger Problem!

No heart camp tonight :(
Cardiology today was blahhhh! K has a little cold and ear infection still. Her echo still looks the same. Dr. E thinks that Kaidence is in mild rejection. Today a bigger problem presented itself. Kaidence's bone marrow has stopped making white cells. White Cells (AKA soldiers in our house) fight off the infections (Bad guys). Kaidence has ZERO soldiers. Why? We are not sure. Could be meds she is on, a handful of virus' or Post transplant Lymphoma. We are focusing on looking into meds or virus' being the issue. If that doesn't resolve the white count then we will move onto the Lymphoma part with the oncologist. I am trying not to cross that bridge unless I am forced to.

Today we removed her from the antibiotic for her ear infections & decreased her Prevacid. She has started shots that will hopefully stimulate her bone marrow into making white cells. Mike will give her shots daily. We will check back in with cardiology on Monday and run a lot of labs to check for those virus's and the other.

Back to the rejection. It would be far to unsafe to start treating it now without her bone marrow not producing white cells. So we wait for her count to come up and then treat the rejection. Its not ideal, but we have no other choice. The good news is that her heart and body are still handling things from the heart standpoint.

PLEASE stay away from us if you have been around anyone sick. Kaidence is in a very dangerous situation at the moment. She is not at the hospital only because she would be more likely to pick up on infection there than at home. She has nothing to fight any illness at the moment. So please help us out for the next little bit with that request. We have been told to keep the boys home as well until this resolves.

As always your prayers are felt and keep us going. Some days I feel like I am saying a constant prayer in my heart because that's when I feel the most peace. We would be so grateful if you would keep Kaidencce in your prayers. Our hearts all already forever grateful for all the many prayers said in our families behalf. Love to you all.


Natalie said...

Shauntelle, My goodness what a journey you are on! I just watched the youtube video recapping your journey with your baby girl. I can see the emotional roller coaster this must be, but I also see your faith and courage as you take each day at a time. Your family is beautiful, your daughter is a miracle and I know that your story is touching the lives of so many, and maybe that is one of K's missions in this life, at such a young age to teach so many of us about faith, and trust in the Lord through our trials and afflictions. My heart goes out to you from one mother to another. My prayers will join those of so many others on behalf of your family. Thank you for sharing your journey. xoxo, Natalie Rush Castleberry

MAYBERRY said...

As a heart family ourselves we totally understand the emotional roller coaster. It sure can be exhausting. Hang in there and just know we are right there along your side.

Em said...

I hate that you are in such turmoil and that miss Kaidence is having to face all of this! It just is not fair, and that makes me mad sometimes! Hang in there. She will be in our prayers, as well as your family.

The Holts said...

I am so sorry to hear this!! I took care of Kaidence a couple years ago at PCMC on the 3rd floor. What a cute girl and you are an amazing mom!!! I have moved away from Salt Lake, but I follow your blog because it is inspiring to me to see how your family pulls together to help your little girl. I'll be praying for you and thinking of you during this difficult time!

Mimi said...

Oh Shauntelle...

What can I do for you?? You are my heart mom hero. Seriously... I don't who is older between us, but I look up to you a lot.

I will pray and pray and pray!!

Mia and K will meet someday soon... I can feel it. Just not tomorrow.

Big hugs!

Djinni said...

What an overwhelming problem to deal with. I will pray for her.
Heart Hugs, ~Djinni~

Mp said...

Oh Shauntelle, all I can say is I'm so sorry. Little Kaidence is a true princess. We love her and will continue to pray for her and you family.