Things I am noticing.....

So I figure that a quick update is better than no update. Two things that I have noticed over the past week are that Kaidence's appetite is blah to non-existent.  The girl is not eating, even the foods she would always ask for 2nds on.  Her weight I am sure is continuing to drop which then narrows her donor pool;(  I feel terrible because truth is that for so long she has been a great eater and I didn't have to worry any longer about what she ate.  The girl was always hungry.  To be honest she drove me crazy because she always wanted to eat.  So I finally taught her how to make her own ham and cheese sandwich.....her favorite. I haven't paid any attention for a while and I think this problem has been going on a little longer than I thought.  Once cardio let me know that her weight has been trending down, I have kept a watchful eye and seen a HUGE difference in her eating AND drinking.  My gut tells me that tube feeds are right around the corner.  I really don’t want to start that again.

The last thing that I have noticed is that Miss K doesn’t enjoy playing with friends like she did before.  She no longer wants to play, ride her bike, jump, play in her playhouse or do much of anything.  It broke my heart the other day when her two friends came over to play and she told me that she didn't want to play because she was tired and needed a nap.  So not a Kaidence thing to do.  My friend brought the same thing to my attention the other day when K was playing at her house with her little girl.  K told her she needed to go home and nap.  Let me remind you that Kaidence was my youngest child to stop naps!  Kaidence doesn't slow down!

So there you have it.  Nothing exciting going on but just the things that I need to have documented.  Please keep Miss K and her 2 heart friends who are waiting for hearts also in your prayers. Thanks friends for checking in......

Here's The Deal.......

Ok....Here is the deal!  FB is an awesome asset to keep in touch and spread the word on what is happening with Miss K quickly.  The down side is that I never get things documented on my blog and am therefore missing out on a lot of journaling.  Therefore, I am going to TRY using my blog as the MAIN place that updates will be.  Likely I will post that there is a blog update on FB with a link over to this blog.  So, when we get a heart.....this blog will be the place to come.

Like I said so much has happened and nothing documented. For example, In May Miss K graduated preschool.  To think we almost didn’t send her because she was waiting for a heart.  Glad we didn't hold off because that heart ticker in the corner of her blog is still counting up!

We have had a few heart caths since my last post on here.  We have treated some spotty rejection episodes since then.  Gone to the cabin, admitted Kaidence into the hospital for an illness that sent her little body into shock (but she recovered quickly) and other things here and there. 

Kaidence's was scheduled for a heart cath for July 3rd.  It was quickly decided by her cardio that it was much too long to wait.  She felt that K's heart pressures needed to be checked out.  They had been fine all along but regardless we cathed her heart last Tuesday.  What a blessing that we did.  Turns out that Kaidence's hearts pumping pressures are high.  We have since learned that her heart biopsy came back clean and rejection free.  That was news we haven't heard for a very long time.  The only bummer was that with such a clean biopsy it only left one reason for the high pressures....Heart Failure.  K's heart is starting to fail.  We started her in a diuretic to help remove the extra fluid from her body in hopes it will help with the pressures and keep the heart from working too hard. We are also talking about tube feeds again because she is losing weight and no longer being that great eater. We briefly talked about the next steps of care if her heart continues in this direction. 

That same week, just days after the heart cath we received the amazing news that her PRAs (antibodies we have to avoid in a new heart) had gone from 46% to ZERO.....This was never expected because it rarely ever happens to this extent. These are antibodies that have been in K's body since 8/2010 when she went into Severe AMR (antibody rejection) and we spent all that time in the CICU.  For her these antibodies are 'bad guys’ and her body has held onto them ever since.  That is until now.  This is nothing short of a miracle! 

What does this mean for Kaidence?  At first it meant that now ANY heart that matched her blood type could be given to her, opening up the donor pool.  However, after cardio discussed this with others it was decided that we still keep these antibodies on her 'avoid' list for transplant even though she technically no longer has them.  WHY??? Your body has memory cells.  Cardio worries that it could be possible for those memory cells to be triggered by these antibodies if her new donor heart tested positive for them.  Then we could be back to where we were in 2010 and NOBODY wants that. So for now it stinks because it does make it harder to find that perfect match.  However, in the long run it will be a blessing and give Kaidence a better chance and hopefully more time on this next heart with less rejection.  I think in the end we will be glad that things played out the way they have.  

We are amazed that these antibodies are no longer in her body. I was hesitant to post our great news on FB because we have some heart buddies that are also waiting for hearts with antibody issues.  I felt bad having such wonderful news come our way. Then I decided that if I could give anyone HOPE then it was what I should do.  Sometimes things happen that cannot be explained.  In the end the thing we have to remember is that the doctors aren't in charge and we aren’t in charge.  One person is in charge and that is our Heavenly Father.  It's so hard to let go of the control (even though we have never had it).  

So just like I end all these post....We will keep waiting! Some days the wait is easier than others and some days the need for a heart seems more urgent then others.  In that same thought, we have been blessed and we are grateful.  Things could be much worse and for many, it is.