Friday, August 17, 2012

Making Progress....

I have a bunch of pictures and videos to post but this place keeps me so busy...Kaidence has been very sleepy.  We were able to force her awake yesterday long enough to go on 2 walks.  That was an order from Dr. K! The crazy thing is that her chest doesn't hurt her (except when she coughs) but it's the Picc line in her leg.  It has made her ankle and foot swell.

Todays chest x ray looked a tiny bit better.  She still has a lot of extra fluid that she needs to get rid of and so today we will take more walks.  Her echo also looked better today and so they are decreasing her Milrinone!  She is starting IVIG (good antibodies) to help her fight off this Parainfluenza.  Overall, her cough is getting better. They seem pleased with how well she is doing.  The thing holding us back are her lungs. I must add that she is SO PINK!  Her cheeks are rosy, I cannot stop touching them because I think she must have a fever with cheeks like that.

I love seeing all the staff that stops by to see Miss K after they learned of her getting a new heart.  They are so excited for her.  I am so grateful that she is surrounded by those who both care for her and love her as well. To all of you that have dropped things off for us....THANK YOU!  You are so thoughtful!  Thank You for taking such wonderful care of us.  To my family and my hubby who are home packing up my house while I sit with K.....I couldn't do it without you.  They have been wonderful to care for my boys, house and the extra bonus of packing for a move!

To all of you who have followed this blog....we are grateful for your many prayers over the years, your kind comments and just knowing that you were here for us.  Some of you we have met but many we have not.  Thank you for putting your heart into my little girls journey.

Wednesday, August 15, 2012

1st day with a new heart!

Today has been so busy.......Kaidence had a great night.  After being extubated at 3:00 she had to wait until 8:00 to drink.  I think that she asked me every 5 minutes what time it was. At last she was able to drink and drink she did! Last night Kaidence woke up asking for the "game basket for when she got her heart". Back in December we were given an incredible basket full of games, gift cards and candy.  We told the kids to save it for when K got her heart.  That way we would have something fun to do together at the hospital.  Sure enough, Kaidence (drugged and all)went through that basket last night and she was so excited. Today she has been a little sleepy.  It's funny because she will open her eyes, try to sit up and ask to play a game.  Then she is asleep within 10 seconds of that.  I promise sweet girl, you will have plenty of time to play all those fun games!

Today she needed to go get a new picc line behind her knee because the one in her arm needs to be removed due to the blood clot.  They are also planning on pulling 2 lines in her groin and 2 lines in her neck.  She has spent the whole day sleeping. Dr. K,  her surgeon wanted to have her up and walking today but that is unlikely since she is still sedated from the procedure. Also, she has an effusion on her left side because Dr. K was unable to get a chest tube in due to scar tissue (likely from the artificail heart 5 years ago). She is pooling blood in on that side but they are hoping it will be absorbed by her body. She still has in 3 chest tubes but she is dong well with her bleeding.  Today she also recieved a blood transfussion (thank you to all who donate blood)! 

This afternoon her aunts and brothers came to see her.  They held her hands but she slept the whole time. Her aunts decorated her room and her brothers brought her roses from Angel Grandma's (k's namesake) garden.   

So sorry this post is all over the place.  Lots going on and little brain power left in me.  My heart and mind have been with the family who gave us this heart.  My prayers are for them. So much gratittude for saving my childs life as their world crumbbled around them.  Please continue to pray for them.  Much love to you all......

Tuesday, August 14, 2012

A New Heart.....A New Begining

Dr. Kaza just came out.  First things first....he was shocked at how sick Kaidence's heart was.  He went on to say that she was much sicker than she ever led on and that this new heart was badly needed.  He said that he hadn't quit seen a heart like hers before.  Her heart was encased in scar tissue that was as hard as bone.  The  heart was restricted and barely moving.  He wasn't sure that Kaidence would have lasted much longer.  The timing he said was in Gods plan and it was all meant to be.

Dr. Kaza said that God has a plan.....he just got into town last night.  Also, when matching for a heart you can take an extreme difference in sizes.  This one was the perfect size for her.  He also said that often when grafting a heart you sometimes just have to make it work but not this time.  This new heart he said "fit to Kaidence like Legos fit each other". He said it was an absolute perfect match, size and all for my girl.

Oh how I pray for this sweet family wherever they may be.   Much love to you all......I am going to see my baby girl.

I will update later.....Keep the prayers coming!

It's Beating...

"It's Beating"......These are the words that instantly bring tears to my eyes. It's so hard to understand how someone could give us such a gift. I am filled with HOPE! Devohn's heart has carried her with grace. Although it became very sick, it kept going. Never giving up, never missing a beat. With how severe K's Coronary Artery disease was....I think we were all shocked as to how well her heart handled things and for how long. So at last, Devohn's heart gets to rest. Knowing it gave life to another little girl. Giving a family enough time to learn her favorite color, the sound of her raspy little voice and for her to know her brothers. Finally, it gave her enough time to get a new heart so that her journey on earth could continue on. We love you Devohn, you are always in our hearts!

The Heart is Here!

Kaidence's new heart is here! As I type this they have started putting it in. Things seem to be going well. So much love already for the sweet little child that is saving my daughter. Religion, race and nothing else matters when it comes to Organ Donation. It's nothing but true, unspoken love for another!


Kaidence is now on bypass.....and the heart should be landing at the airport around 8:00am and then it will likely be flown from the airport to the hospital by helicopter. Her bleeding is under control and things seem to be going well.

First Incision

We just got a call that all lines are in. Dr. Kaza is getting ready to make the incision. The other surgeon has already looked at the new heart and is removing it. It will take about 1 1/2-2 hours to fly it back. Thank You for the many prayers for our family and all families involved.... Words cannot even explain how blessed we have been. Kaidence is here because of a sweet little boy named Devohn who will ALWAYS be our Super Hero! They are forever a part of our family. How healing it has been to get to know them over the last 5 years. To think that once again we are on this journey. We have been given another chance with Miss K..... To these two families our hearts are humbled with nothing but pure love and prayers for you.

In Surgery

They just took back my baby girl......I am so nervous but know ALL is in Gods hands!

Monday, August 13, 2012

We have a HEART!!!

We have a HEART!!!  We got the call at 5:59pm.  We ask for prayers for Devohn's family and our new donor family.  May they find a little peace in their hearts as a their childs heart continues to beat on.  To all our dear friends waiting for hearts.....You are next!!!  Yes, Thursdays meeting will still go on!!! Check back here for updates.  Love to you all!!!