Saturday, May 31, 2008

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.

6 comments:

laurel said...

It was nice to meet you today at the telethon. I hope everything continues to go well for your sweet family! (Our son co-hosted and we talked to you afterward) The Hill family.

Denita Skousen said...

It is so amazing how much progress Kaidence has made. It is truly a miracle. I am so looking forward to getting together with you and your kids hopefully this weekend if everything works out well. Thanks for the good news report it is nice to have these.

Crystal said...

I have some Bloggy Love for you over at Memoirs of a Mommy

Debbie said...

Shauntelle and Mike, Thank you for sharing the DVD you did for the heart association dinner. I cried through it. What a year this has been. And you will never know how many lives have been touched. What a wonderful blessing you can now be to all of these other people who are going through similar things. I hope Kaidences is doing better. Hope to see you on Thurs. Love to you all Aunt Deb

Stacy said...

Shauntelle, it seems that things are going well for you. We've been interested in Kaidence's progress and are so happy to hear when things are good. She looks like such a sweet little girl. Your story has touched so many. What a blessing! -Matt and Stacy

Spencer and Becky Wertz said...

It was great seeing you guys last night at grandpas!! we will have to figure a time that we can get together with Brenda and do that girls day out. I forgot to ask you any updates on Christian?