ON OUR WAY HOME!

This morning Kaidence's WBC was up to .8 (800). The Doctors are pretty happy that the shot given yesterday boosted the numbers so well. I wish that the numbers were because she did it on her own. Just for the fact alone that I would not have to worry any longer about the Bone Marrow stuff. Instead we will wait and see what next week brings. Had an echo this morning but have not heard any results. We are happy that we get to go home today. We are excited and hopefully we can keep her healthy. We will still do our normal 2x a week appts.

Still waiting to here about Shalyse, but sounds like labor is progressing well.

GOOD LUCK SHALYSE!!!!

Sending good luck wishes tonight to my little sis who is having her baby tomorrow. She goes in ealry morning to be induced. We pray that things will move quickly and safely. I think she is having a boy but we will just have to wait and see. I wish I could be there.

Sorry , I am posting so late once again. Kaidence's count is down again today. They have decided on some different meds to try and this evening gave her the Neupogen (sp?) IV. This will help give her neutrophils a boost. I am worried that it could mask something, but it sounds like they have all thought this out. They will check numbers in the morning. If they are higher they talked about sending Kaidence home soon. However, I am not sure that everyone at our home is healthy and well. The shot will last about 5 days. If the numbers stay up, great. If they drop again we will then check her Bone Marrow. They will do an echo tomorrow. Kaidence's cath lab and stint procedure has been moved out to April 10th.

KAIDENCE UPDATE

Sorry that I waited so long to update. Today started out being busy right from the start. Cardiology came by and discussed some new medications. The cancer doctor came in and looked kaidence over. He looked over her blood test from last evening and feels that she is making enough RED blood cells and that definitely points us in a better direction for now. He said that some cancers only affect the WHITE blood cells but at this point he still feels that it is medication or virus related. He will continue watching for signs otherwise and only do the bone marrow as a last result. We will keep it in the back of our minds. Big sigh of relief for today. I enjoy and savor the days that bring good news in case I need to bottle a little sweetness for the next day to keep on hand. These road bumps are good realtiy checks for us. It sure keeps us counting our blessings. It helps remind us that things could always be worse. They took Kaidence off a med called Cellcept. They had the big transplant meeting this morning with all the surrounding hospitals and discussed the issues with Kaidence. I think that all the transplant docs around must know a lot about my daughter. They feel that the Cellcept is a very likely source. They took her off and hopefully her immune system will stay suppressed enough without it so that she doesn't go into rejection. At this point rejection is less risky than no immune system. We are on super precautions with Kaidence to keep her germ free.
We did some feeding therapy with Kaidence, but it is going to take a lot of time and work to get Kaidence eating like she should be. It brings me a lot of frustration because so much is involved in something that you and I don't think twice about.
Kaidence looks great and she is happy as usual. Hopefully her blood test will look better tomorrow. Thank You Traci and Mikayla for the "Rainbow Cafe" gift card. You are right, it does get very expensive. I have never had one of these before and it is a blessing to me, so thank you for thinking of us.
Thank You everyone for your prayers. We depend on them. I think I will sleep much better tonight.

HOSPITAL AGAIN -TAKE 2 (OR 3, 4, 5, .......)

Well really, what would your day be like without a little drama from our little Kaidence?We went to Cardiology today and never got to go home. We love the hospital, what can I say? Kaidence's WBC count is .1 the lowest that it has ever been. We thought that we were on top of it because Kaidence looked so much better. It caught us all by surprise. If blood test don't give us a cause then they will take some of her bone marrow and start looking into different Cancers. I don't want it to get that far. I am terrified at the thought of cancer and have no idea what we would decide if it got to that point. We need prayers for the team of doctors that are trying to figure it all out. I am praying that it is a simple answer and that we can catch it soon so that my family can be home together. We will update the blog as we are updated.

Kaidence still is not a fan of eating however today she decided that she liked ranch vegetable dip and Chile Verde sauce. A little crazy, I know. Especially for a kid that won't eat anything at all.
Please continue to pray for Carson and if you could please include our little family. We really need it now. I am afraid once again of the unknown and once again it is out of my control.

PLEASE, PRAY FOR CARSON!!!

Kaidence has struggled off and on today. Still throwing up here and there. She looks a little pale. However, this evening her color looked much better but after taking her temperature (we have to do that and her heart rate 2x day) decided it may be because she is slightly feverish. I am hoping that her pj's were just too warm and so I changed her clothes and we will see.

I know that this is the place to post if I need to ask for prayers. Please, Please pray for our little friend Carson and his family. Carson and Kaidence were roommates in the PICU in July and we have kept close tabs on each other. He has been at PCMC since the beginning of July and his family lives very far away from Utah. His mom has stayed by his bedside for months as he has fought cancer and his daddy stayed back home to keep things running as he worked and cared for Carson big sis. Unfortunately the cancer has spread. They have taken Carson home to be with his parents, sister and new baby brother that was born yesterday. This is an incredible family that has had their faith tested over and over again. They need our prayers as they continue to have much to endure. We love them and know that we cannot be with them physically as they go through this bitter sweet time in their lives but we can pray for them. Please pray for little Carson that he may have comfort and peace as well as his parents. He has fought so hard. We know it is all in the Lord's hands. We love you Carson and family. Thanks for being an example to our family.

A NIGHT IN THE E.R.

We are back in the ER this evening. Kaidence has started throwing up again today and not feeling the best. She refuses to eat and has only kept down 3 oz today. She has been sleeping a lot as well. The cardiologist sent us in because her labs from earlier showed that she was getting dehydrated. Her behavior comes in waves of looking very icky and sick to looking OK. This blood infection she has is very serious and they want to stay on top of things. Her doctors said that so many people have invested so much in Kaidence they said that they won't take any chances. They originally thought that Kaidence would be admitted right away, however it sounds like Kaidence may go home after getting some fluids. Mike gave her a blessing before leaving and I am so grateful for that. I think that I was on the verge of having a mental breakdown tonight. The thought of going back and doing this again was very depressing (mostly because I worry about the boys, I know it is hard on them. Also because I hate pawning them off on others,. Mike needs to work so he can keep his job, of course). However, when I do start to feel worn down, tired and frustrated I count my blessing and think of our dearest PICU friends that would give anything to be back in our shoes. It's all about perspective.

HOME AGAIN, HOME AGAIN!!!

Well, finally late this afternoon we made it home. We are home for now and hope that it stays that way, but on the way home Kaidence started throwing up again. We will watch her tonight and see what happens. Her count today was up to .6, so better. They gave her IVIG which helps her immune system for the next 4 weeks. Hopefully they can figure what med is triggering this before we have a problem from her not getting her meds. We have 2 meds that we have temporarily taken her off of, but she needs to really be on both. However, this is the only way to figure out what is causing the problem. The good old process of elimination. We are waiting for home health to bring us her IV medications. Kaidence is happy to be home and loves to have her brothers around her.

We received another wonderful letter form SSI today telling us they will no longer give us the money needed to pay for Kaidences meds each month. We aren't quiet sure what happened but they told us that was how it would be from now on. They told me it dropped because Mike has a job. Hello, he has had a job all along. I supplied them with pay stubbs and W2's and always spoke with someone personally to update income status. I have received 3 SSI letters in about 1.5 months, each giving me a different amount that Kaidence qualified for. I think they are confused. Needless to say we are very disappointed about the major drop in SSI income for Kaidence. We really needed it. It is frustrating when you call and personally talk with someone and they tell you that you can count on this money for her medical and they just take it away. Oh well, life goes on. But we would apparently be further ahead once again if Mike just quit his job. Crazy how it all works. I have decided to appeal our Medicade Denial. We will wait and see what happens with that.

Other than that hopefully a quiet night at home and in my own bed. I am exhausted and I am sure that Mike is as well. He has had the kids for pretty much the most part of this ordeal. I grateful for him and all he does. He is a great daddy. Thanks for your prayers and as always we count our many blessings!!!