BACK IN THE HOSPITAL!

We have once again been admitted to "our house on the hill". Cardiology admitted Kaidence this afternoon after her Cardiology appt. We are trying to get to the bottom of what is making her so sick. I think it has a lot to do with her medication levels. She is still vomiting and very lethargic. They did an echo, EKG and some blood work. So far nothing with the heart looks suspicious (still keeping our fingers crossed). We will also most likely do her G-tube procedure before leaving (whenever that will be) while we are here already but they have to get her stronger first. We will just wait and see what happens. I had a feeling that we would be here this week. You think I would have showered before coming or at least pack a bag. NOPE, that would jinx me! We will keep you posted.

SICK, BUT WHY????

We have had a very busy week. Kaidence has been sick again and has really started to worry Mike and I. She has been throwing up and not eating since last Wednesday. Her Immunosuppression levels are too high as well. She just is not herself at all and seems so sad. The doctors are not sure what is wrong. I called today and asked that her Thursday appt be moved to tomorrow. I am worried about rejection but most likely because I am just a worrier. Anyhow, they have also decided that Kaidence will need to have a g-tube placed because she has continued losing weight ( I think she is down about 3 lbs from her heaviest weight at home). The feeding tube in the nose has started to aggravate her and has kept her eating anything by mouth. She won't even take milk or any liquid. She has had the tube for just about a year and they think that the tube has caused her too many oral aversions (exactly what I have been worried about all along). We will see tomorrow when they will take her in for that procedure. I have told them to do whatever they need to do so that I can have Kaidence healthy and happy again. She looks too skinny. They also cut down the dose of another medication that was just recently added back to her medication schedule. I am hoping that will help. She seems to do better on less immunosuppression. Your prayers would once again be greatly appreciated. I will update tomorrow.

KAIDENCE UPDATE AND I'VE BEEN TAGGED!

OK, so we are losing weight instead of gaining. I took Kaidence in today for some blood work. I weighed her and she has lost weight. What???? I should have mentioned in my last post that she has been on Pediasure for about 4 months. I have been trying a new product that my doctor gave to me called Duocal. It adds even more calories to her food and you can add it to anything, even bake with it. That would be great if we could get her to eat. She aspirated the other night and then threw it up. She has also started throwing up today and she looks not so great and now I don't smell so great. We will wait and see what happens. Hopefully, she can hold down her meds and we can keep her home.

I was tagged by my cousin...so here it goes:

Joys:
1. My Husband
2. My Kids
3. Miracles


Fears:
1. Something serious happening to someone in my family (again)
2. Natural Disaster
3. My kids growing up to be naughty ( they are GREAT kids, I just wouldn't be me if I did not worry about EVERYTHING)


Goals:
1. Keep my sanity from day to day as I raise my 3 beautiful, energetic children
2. Enjoy and savor the little things in life with my kiddos and hubby
3. Spiritually feed my children, my marriage and myself

Current Obsessions/Collections:
1. Kaidence's Lab results/ medication schedule
2. My collection of dust
3. Chocolate and Pepsi (working on it)


Random Facts About Myself
1. I cannot shower at a hotel EVER without flip flops ( doesn't matter how nice)
2. I have never had a ticket or a broken bone (I am just asking for it.....I knocked on wood, Don't worry)
3. I have super long toes (now you'll all be looking)


Now I tag
ANGIE, PAULA AND LORI

YES, WE ARE STILL HERE!!!

OK....I am back to blogging....I think! Well, I was once again waiting to post pictures of everything and still will, eventually. Parker is doing well and making improvements daily. He as well as 3 other PICU buddies had a rough day on thursday. Please remember these little ones and their families and doctors in your prayers. They desperately need it this week.
We had cardiology and all still looks well, except Kaidence's weight gain. She has lost some weight as we have been trialing her off of the feeding tube ( that has been wonderful to be without). She is 19lbs13oz (10th percentile). She has always been on the smaller side even before she got sick. We have a month to get her to eat and gain weight or else....the tube makes a comeback. I have need to get 1000 calories/day in a child that won't eat (still figuring that one out). I of course could do this in one meal but they don't seem to worried about me gaining enough. We are boosting her already boosted food but we need her to start taking more of it. Also, we got rid of all her oxygen ....yeah!!!!!!
I also have been trying to de-junk. I don't know how it happened (well I really know...it's called kids) but we have tooooooo much junk and they have too many weird toys. I cleaned out the boys closet and do you really think that I need an MC Hammer TAPE still, I mean seriously? I had a good laugh. Also a few weeks ago my sis helped me clean out my closet. Well, lets just say that I took a step back into Junior High. I don't know what I was thinking but I think I might have an illness and just can't let clothes go and I take whatever someone hands down. I haven't even worn 3/4 of them in years. Maybe it is because I know that I won't buy clothes for myself because it is more important to eat and have a house and sometimes you just have to prioritize and new clothes just isn't at the top of my list. Anyhow, I took 5 BIG black garbage sacks to the DI and yes, all from my tiny closet. I do have a sickness. Angie, you have a shoe problem, I have an outdated clothes problem. So I am getting some much need de-junking done so that my house can continue to hold our family.
We have been busy doing some fun family things that I will blog about with the pictures so that I can catch everyone up (this is after all pretty much my journal). I just wanted to quickly post and say, YES we are still here and all is well. I promise to get those pics up soon....maybe sooner than you think ( I hope)!

PARKER UPDATE!

It's about 2 am and I just got home from the hospital. It was great to visit with his family. Parker is still in surgery and the heart should be there about now. Last I heard is was doing great and they were just waiting. His mommy will call when he is done and I will post more after I wake up......goodnight. PS.....I found his care page interesting. If you read back maybe a week or so his mom talked about a blessing that Parker was given by his Grandpa. The post from that day talks about how her dad said that June 10th kept coming into his mind throughout the blessing. She went on to say they were all anxiously waiting to see what June 10th brought them. What's today's date??????? The Lord DOES have a plan.

PARKER IS GETTING A NEW HEART TONIGHT!!!

Parker's Mommy just called and told me that tonight is Parkers Night. He is getting his new heart. I find myself flooded with emotion and am so grateful to those that give these kids a second chance at life. And to think that they give the greatest gift of all when they are living their worst nightmare. Heavenly Father loves us all and has a plan for all of us. I did not know what Kaidence's plan was but knew that Heavenly Father did know what was best for her and that if I let him he would be sure that her plan came to pass and that in turn I would be prepared and strengthened to face whatever challenges that I had before me. Please keep him in your prayers as well as the family that has lost their little one this day.

BUSY IS GOOD...RIGHT?

What a busy week!!! McCaden graduated from Kindergarten and is home for the summer. I am actually glad about this because school added more complication with hospital appointments and everything else. And really, a half of a day for Kindergarten, that is crazy. Especially throwing in early out on Friday. I wish they changed it to full day. McCaden has grown so much this year and he did VERY well, even with all of the distraction we had this whole school year. I am so proud of him. It has been fun having Camden home to hang out with. He is a wonderful big brother for his little sis and plays with her a lot. She sure loves him. We had Cardiology this Thursday. We were at the hospital from 8:45am - 7:30pm, it was a very long day. We had a wonderful time meeting Christians family and he looks really good considering how sick he is. He has a very kind family and it was great to talk with someone that could relate to me. We also met some other wonderful families and another little kiddo waiting for a heart transplant. He came into the hospital after we left in January and has been listed for a heart for 3 months. Just a reminder to us about how important organ donation is. It was wonderful seeing kaidence's VAD team and Dr. Kouretus her heart surgeon. We had a very rewarding day. It was nice to know that we can now use our trials and experiences to help bring hope, knowledge and peace to others.
Kaidence's appointment went well. We have changed her Cyclosporin to 2x/day instead of the 3x. That is VERY exciting to me because I am usually the one giving it and she HATES it. Also her echo looked great. Her EF (remember the number that used to be 3% with her old heart?) Well it was 72%. AWESOME!!! Also, the regurgitation issue after the Cath Lab seems to be looking a little better. They are now calling it mild instead of medium. We are very happy about that. Kaidence seems so happy and normal to me. We also had to return the next day to have another Cyclosporin level drawn. Apparently the results came back at 650 (toxic) so we assumed it was an error. So we drew the labs later that night again but as I was leaving the hospital I was chased down and told that they put the blood in the wrong container so they would have to redraw it again.. I guess "the 3rd times the charm". Well, I had already given her her meds so we had to travel back up to the hospital in the morning. After that test (results came back fine) we went and did the "Studio 5" Show on KSL. I also picked up the documentary on Kaidence so if you would like to borrow it let me know I have a couple of copies. Sunday will be the telethon. We hope to help the hospital raise money for those that can't afford medical care. These families are from all walks of life and I know that we received some of that money when they covered Kaidence's prescription cost the day we brought her home from the hospital the first month. They took care of it for us since it was unexpectedly so expensive. It also helps in situations where insurance won't cover something like the berlin heart or whatever it may be. Now thankfully, our insurance did cover it (THANK YOU DMBA) but we were told they the hospital would never let Kaidence die because insurance did not cover it or we could not pay. We hope that this years telethon will be a huge success for all the many kids and families that will depend on it this next year.