KAIDENCE CONTINUES TO POOP & SLEEP ALL DAY LONG!

Kaidence continues to sleep and poop all day long and when I say poop, I am not kidding. I am amazed at what a mess such a little thing can make.The Cardiology team and Medical team met together today to discuss a game plan for Kaidence. Not much has changed but at least everybody is on the same page at last. As I said Kaidence sleeps a lot however, I know that she knows I am their. As she sleeps she has started grabbing my finger and holding on very tight. I feel bad when I have to leave and pry her fingers away from mine. She hold so tight that my finger turns purple and her fingers turn white.
I want you all to know how much I love reading your messages. Their is a feeling that comes with knowing that we have so many people that are checking in on our family. It is a sense of love, peace and security. I love having the blog because it can reach everyone no matter where they are.
We know that whatever happens we have all of you that will be standing by us. We cannot ask for more support than what all of you have given to our little family as well as our extended family. We love all of you!
I am so thankful for the gospel in my life. I am so thankful that Mike and I have been blessed with an eternal family. The blessings of temple marriage will keep our family together forever. The Lord wants us to love our family with everything that we are. He gave us our families because he loves us and he would never say that death is the end of these beautiful relationships. That is why he provided a way for us to all live together again.

Today Kaidence had her echo. Her EF (function) went from 9% to 15% and one other part of the echo looked slightly better as well. I know that Cardiology won't be as excited as I am and they will say that she still needs a heart and that is fine but they are also the ones that told me that her function would never get better. I even asked when she was first admitted this last time to PICU if it could make it make it back up to 15% which is what we took her home on after she was first diagnosed - they told me a firm NO. They said that it would never happen. So we have gone from 3%-15% which I think is great. At least it is a step in the right direction. I look at this as another miracle which is the same term that the Dr's said that it would take to get her function back to 15%. We have once again been blessed.

I am going home today and I am very excited to see Mike and my boys. Kaidence is doing well and sleeping a great deal today. The Dr's think that she looks good and they will continue to ween her from meds.

Today has been a relaxing day. Kaidence played a little today and we gave her a pretty good scrub down. I even put her in some of her PJ's from home, it took some time to get them around everything but we did it. The boys are doing well and I miss being a mom to them. Maybe tomorrow I can sneak away for a while. I would love to shower in my very own shower. I still feel major anxiety whenever I think about the transplant. We are waiting and I am still having faith in my miracle and the blessings that see has been given. I see little improvements in Kaidence everyday but I don't know that it means as much to the Dr's as it does to myself. I continue to feel that the longer I am here and try to advocate for Kaidence the more crazy they think that I am. I am so tired of people telling me that Kaidence will never get better. Why can't they understand that miracles do happen and she could be one of them if it is the will of the Lord. They tell me this daily and the more they tell me the more my faith increases in miracles. I won't let them tear down my beliefs.

TENSE TIMES

I have to make this fast because it is midnight and I took my melatonin and it's starting to work. We had some family come and visit today and that is always great to see a familiar face in this place.
So tonight I took the boys to our wards Halloween Carnival while Mike stayed at the hospital with kaidence. We switched and I came back to PCMC around 8:15. They decided to place a line from Kaidence's neck into her heart to deliver medications this evening. Well things did not go so well. They were able to thread the wire but then it suddenly stopped and when they tried to pull back it was stuck. Things started getting crazy fast. Her room had many people in it very quickly and I suddenly ended up out in the hall as they paged Dr.'s down to her room. The wire was stuck and they said that if it was stuck in the heart (which is where the wire was supposed to go) that we could be in some serious trouble. While the Dr. held pressure on Kaidence's neck they order blood and an x-ray STAT. They told me I may need to call Mike if the x-ray did not look ok. A radiologist came up and we were able to see what had happened. While placing the line the wire folded itself in half so it was catching as they would pull back. Needless to say after some time and some pretty unsure moments from everybody everything turned out great. The whole time Kaidence held her own with her blood pressure and heart rate. Everything is fine but I was pretty stressed when it it was happeneing and afraidthat this was it. I am so thankul as I go to bed tonight that the Lord has watched over my sweet kaidence once again. Thank You all for all of your prayers.

Another morning has come. Today Kaidence is pretty sleepy after her fun playful day. They are going to start weening her off some of the narcotics. Her cardiologist came in last evening and said that she does not want Kaidence to be on all of the narcotics that she has been on. She feels that it is important that she interact with her family daily. So slowly they will take her off.
Today around 2:00-3:00 they are taking her in to have another pic line placed but this time in her thigh. The lines that she has going into her groin have started to leak and they need to pull them before infection takes place. Hopefully all will go well with that. Thank You to everyone who is keeping us in our prayers and helping our family out with meals. We are still holding out for a miracle either way. We are trying our best daily.

Happy 8 Month Birthday Kaidence!!!!!

Apparently the doctors forgot to tell Kaidence just how sick she really is. Kaidence woke up this morning wanting to play with her mommy. I even got another smile despite the tubes and tape that is all over her mouth. Needless to say they aren't pleased with her level of activity. The medical team wants her to be completely still, but Kaidence has another idea. I am just glad to see that she still has some fight in her. They have given her multiple doses of heavy duty narcotics the past 3 hours but she is having none of it. I can honestly say I have not seen her this active and playful in about 13 days. She looks so great. Like a normal baby and the crazy thing about it is that while she is pulling her legs to her chest and crabbing and shaking her toys like crazy - She is NOT sweating!!!!!!!!!!!!!!!!!!!!!!!!

Can you believe it has been exactly 1 year today since my grandma, Kaidence name sake has passed away? I have missed her so much but at the same time I am glad that she is where she can watch over Kaidence and give her some comfort. Some days I think that she may be the only visitor that Kaidence knows is there. It is also Kaidence's 8 month birthday today. Happy 8 month Birthday Sis!!! WE LOVE YOU!!!

NEW ROOM

OK so we finally got our old room back from our last trip. Room #12. I am so excited. This has been a lucky room for us in the past and best of all - it's private. They thought they would move her since she would be here a while and the fact that she would be less likely to get sick in a private room. I wanted to let everyone know. So the last two digits of her phone number have changed to 12.

MORNING UPDATE

I am giving an update this morning because everybody usually logs in first thing in the morning and at night right before they go to bed. Things are still the same, just waiting. Kaidence had a pretty good night. They are giving her another blood transfuion today to boost her red blood cells. She is still sedated but resting well. We will continue to hold tight.

HAPPY BIRTHDAY MIKE!!!

First of all today is Mikes Birthday. Happy Birthday Mike. I love you so much and am so gratefule that I have you holding my hand as we climb this overwheling mountain that is before us. . . You are the BEST. I Love You!!!!

We went to McCaden's Primary program and he did a wonderful job. I am so proud of how much he has grown. Camden and I played "puppy dogs" while I was home. That seemed to keep him pretty happy. Not to mention his dad's birthday cake.

Kaidence has slept all day long. She also finally had a big poop. Yes, we get excited about the little things these days. Her heart does not tolerate her being moved and her blood pressure and heart rate struggle. My Aunt Deb sent me a wonderful talk about "waiting on the Lord." The following stood out to me.

"We must be content and peaceful about the spiritual nudgings we may receive and be grateful for those occasional illuminating moments of brighter light and clear understanding."

We recognize those many moments that we have had these last few months. We have witnessed the "occasional illuminating moments of brighter light" and we know with time we will gain a clear understanding. We are grateful for our many blessings.