Friday, August 13, 2010

Good News!

Kaidence went in bright and early this morning for her heart cath. Everything went well. Her pressures were so much better. We just got the biopsy results. Her antibody rejection is only
"Suspicious AMR" where as last week it lights and sirens positive AMR. We are SO happy with the results, considering we are short 2 blood dialysis treatments. I have had so much anxiety today. The plan has changed a bit. Tonight we will start some new treatments called IVIG. She will get one tonight, tomorrow and the go H _ _ _ _ on Sunday. A whole week earlier than expected YEAH!!!!!! Kaidence has a BIG list of meds once again, but not as many doses as post transplant. That will taper off over time. She cant wait to get home and see her doggy Kirby. Next Friday, Kaidence will have another heart cath and they will once again biopsy just to be sure those antibodies aren't trying to pop up again. Appointments with cardiology will be weekly now for the next little while. I am ok with that, because I am a bit more paranoid now. I prefer they closely watch her.

Today Kaidence has had a good day. She is eating well and keeps me busy. She is patient and kind to the nurses and they all seemed amazed at what a polite little 3 year old she is. She never throws any fits here and always wants to help her nurses. Those doing her dialysis treatments were also amazed at what a good natured, sweet little girl she is. I am proud of my Kaidence. I never want her to be a "cardiology brat". We work hard to try to avoid that.
Doesn't mean she's always on her best behavior, but no problems this trip. Today she was SO excited for me to take her up to the patio and ride a bike. We had to scrub the thing down so she could ride it, but it was so worth it. The sunshine felt great as well. Tomorrow we are hoping to go up again and Kaidence will get to paint the walls and concrete of the patio until her heart is content. She has become a little artist this hospital stay. Yesterday she painted, used stickers, made a magic wand and had fun with glue and glitter. Lets just say it looked like "Fancy Nancy" threw up in her room. In fact, she still had glitter on her body this morning when she went to the cath lab.

Thank You all for your prayers this week. It was hard and unexpected. It was heartbreaking to see Kaidence so deathly ill. I am so grateful for prayer, fasting, great family and friends. Thank you for always being there for us. We could not walk this journey alone.


angie said...

The sigh of relief heard round the world! So glad things went good today. Love your guts and K's little guts too.

Anonymous said...

I've been checking in EVERY day to check on Ms.K I'm so relieved that she is doing so well so fast, I last week I sat on the couch with my mom and cried for her, You've been such an amazing friend and Ms.K has touched my life and I've truly worried myself sick the past week.
I'm glad to get a good update and you better be taking care of your self and that baby too lol, let me know if you need anything and I'm THERE!!!!!
Love, Jackie

Summer said...

Yeah! I love GOOD news!!! And, be glad the K doesn't have the routine of treatments Mason had for his severe rejection at Stanford. He had 5 days of plasmapheresis w/ IVIG following it daily, a 2 day break, and then 5 more days of the same treatment because the first round didn't get rid of enough antibodies!!! I'm so so happy K has responded well and quickly to her treatments. If you are still there MOnday, Mason and I will come visit. He has clinic at 9am. Praying and Hoping for a great weekend for Mom and K :)

Me said...

Yahoo!!! I have been waiting all day for your update. I am so glad that she has bounced back so fast. I love that she is a little artist and that she had glitter on her for the cath lab. We missed you guys tonight at the IHH camp.

Unknown said...

I'm soooooo glad Shaun! As always you are all in our prayers. Love ya, Paula

NikkiAWardell said...

I just found Kaidence's blog and can't believe I haven't found you before!! I have a daughter with ToF and she has had two open heart surgeries. I can't imagine all that you and Kaidence have been through. What a little fighter she is. I am glad things are going well for her now and hope that she continues to improve. She will be in my prayers and thoughts.