Thursday, October 20, 2011

What we know at the moment.........

I haven't spoken with Dr. E yet so I don't know too much. I do know that K's CAD is still pretty severe. They tried some different medications while in the heart cath hoping that it would relax the arteries. It didn't really make any difference. During the cath K's heart rate to slow from 130 to 70. This could be because of the medication or restricted blood flow from either the narrow artery or the catheter. They were planning on sending her to the CICU to watch and briefly talked about placing her on a pacemaker. Looks like our DisneyWorld trip is an hold for a long while.
As of late, her heart rate has stabilized. They will send her to the floor tonight to be watched.
UPDATE: Spoke with Dr. E and she seems to think that we need to re-list Kaidence. We shouldn't have a problem getting her listed for a new heart as long as her biopsy comes back 'clean'. If she has any rejection.......Kaidence cannot be listed until it's all cleared up. So we are praying that her heart tissue looks good and rejection free so that we can get her listed asap. They are changing her Rapamune back to Cellcept. These are antirejection drugs. Rapamune and wound healing do NOT go hand in hand. Therefore we will take her off that medication today and start back on the Cellcept. We are hoping that the surgeons will still allow Kaidence to be listed with that medication still in her system. The worry is that if she did get re-transplanted with this medication in her system her sternumotomy won't heal.
We still are waiting to meet with the surgeons & nutritionist. Wow!!!!
I will post more as we get test results. We are hoping for 1) Being rejection free 2)low antibodies (this will open up the donor pool). 3)Re-listing her ASAP 4) Her sweet little heart holds out long enough for her to get a new one.

Today seems like a dream. Not my favorite dream but a dream none the less. I cannot believe we are really doing this so soon. I have many mixed emotions about everything. I have grown so attached to our sweet donor family. No matter what happens, we will always be family. They have given us what no one else could. They have changed our lives for the better. I hope they know how grateful they are for what they have given to us and for the relationship that we have with them. They are wonderful people. I love that little angel heart that has been beating within her chest!

8 comments:

The Little Lamb and the Strong Lion said...

We are praying for Kaidence...what a sweet little girl. You are amazing and such a strength to me. I look up to you so much. We will continue to pray for Kaidence and your family.

Clemments Family said...

Lots and lots of prayers headed your way. You are an amazing Mom and you know whats right for Kaidence. Always thinking of you guys!

Petersen Palace said...

wow a dream world for sure! I hope little Kaidence gets listed soon. We love Dr. D. He is so personal and spends unrushed time with his patients. Good luck! Prayers coming your way!

Angee and Thom said...

Praying for an uneventful night. Stay strong.

Me said...

I just want you to know that I am constantly thinking and praying for Kaidence. Every prayer said in our house she is prayed for. We love you. We will be watching for more news. Praying for NO rejection!!

Kyle and Alli said...

I hope that your night was smooth and uneventful. I can't imagine all of the feelings of doing this all over again. Please know that we are praying for you all and checking in for news!

Summer said...

Oh my goodness Shauntelle.......a sureal dream for sure, or even could we say, Dejavu??? I pray for great results from Miss K's biopsy and antibody results. I pray she stays strong and healthy as you wait for a new heart. You and little Miss K are and always will be my heroes!!!

Please give a hug and high five to Kaidence from Mason :-)

Love, Mason's Mommy

Derek said...

A sweet dream? or A beautiful nightmare?