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!!!

HOME TOMORROW???

Sorry that I am posting so late. Kaidence was able to get her pic line in easily for once. All went very well with that. Today her count was lower (.2). They are still trying to figure things out. She looks great. We are hoping her numbers will be up tomorrow and we will adjust some meds and send her home. If they are still low tomorrow they have decided to give her a shot that she will get every 5 days to help boost her WBC. They will then adjust meds as well and send her home. We are planning on coming home sometime tomorrow afternoon unless something weird happens. She will have a pic line and 2 IV antibiotics. Speaking from the last time that we did the pic line and antibiotics at home it was a lot of work with very little sleep involved. That's ok though, we just want her home.

A Big Thank You to those that have come to see Kaidence, those of you that brought me dinner tonight and to those that took dinner to Mike and the boys tonight just because. We appreciate all of our family and friends. WE love you all and mostly Thank You all for your prayers and words of support. We are excited to leave this place but we love the feelings of gratitude that being here again brings to us. We have learned so much as we watched Kaidence and others families endure their own trials with grace.

LOW WHITE BLOOD CELLS!

Today Kaidence threw up and her white count is down again (not good). Let me TRY to explain what they THINK is going on, but I don't completely understand it. Because Kaidence is immunosuppressed she has fewer white blood cells (WBC) to fight off infection. However, there are many different types of WBC's. The white cells that Kaidence does have are the weaker of the WBC's, the big guns (T cells) have been suppressed. So these cells that she does have are her last defense to fight off infection of sorts. They noticed that the WBC she does have are decreasing over the post couple of weeks. They think that because these numbers have been so low (as low as .2) that Kaidence was exposed to something and unable to fight it off. They are wondering if one of her medications is causing her numbers to drop. They are starting to take her off 1 med at a time to see if they can figure which one. Once they find an answer they are unsure what they will do since Kaidence does need all of these medications to either keep her heart from rejecting or to protect her against things that could be serious for an immunosuppressed person.

Other than that we are just waiting to see what happens. Ironically we are above our old room in the PICU. Same view and all. I think I am a little depressed because I would love to go home and I know that we will be back later this month for her procedure and afraid that we will have a hard time getting out of here then as well. I know that sounds so negative so that is all you will hear of that.

McCaden and Camden came up today. Kaidence was very excited to see her brothers. McCaden took part in a sort of day camp that PCMC had today for siblings of those that have life threatening illnesses. He seemed to enjoy himself and it was good for him to see that other kids like him have parents that have to stay at the hospital a lot as well. Camden and I had fun cuddling and watching movies. We had a picnic at the Rainbow Cafe as well.

For the most part things are well and we are grateful that things aren't as bad as they can be.

GOOD NIGHT, LOTS OF DIAPERS!

Kaidence had a pretty good night, but a lot of diarrhea. Most likely from all of the antibiotics. The docs are still boggled as to how she has picked up this infection. We are still waiting for negative cultures. They may let Kaidence start eating, not sure yet though.

Does anybody have any DAVIS COUNTY CLIPPERS from Tuesday? I just need the page with the baby birthday's. I placed a picture of Kaidence in the paper and was so busy with her throwing up that I forgot and never got one for ourselves. I needed a couple to put with her other scrapbook stuff. If you do have them will you please save them for us?

Thanks for all of your prayers.

FEELING BETTER!

Kaidence seems happy today. The Dr's are very surprised at how well she has handled this septic blood infection while being immunosuppressed. They are also surprised at how quickly she has bounced back. She was very sick but anybody with this type of infection would be. We feel very blessed. She is still not fully back to her normal self but we are getting closer and her antibiotics seem to be working. The doctors don't feel that she is ready to eat still and she also still seems to need her oxygen. So we still have a few things to work on. I have noticed her starting to cough, hoping nothing comes of it.