Thursday, May 14, 2026

Long Time, No Post, Buckle Up.


 WOW!  Where do I begin?!  I'll give you the quick, dirty version - hopefully long story short!  The OEM ticker can't be tweaked anymore - time for a new pump (heart)!  We were told that this was probably inevitable but had hoped to kick the can down the road a little further!  The Good Lord has a better plan so we will trust in him!  In the last few months we have also learned that the ol' liver may need swappin as well - single ventricle hearts such as mine can cause some pretty extensive wear and tear on one's liver.  A recent biopsy showed that there is considerable cirrhosing of my liver and it may not be able to regenerate / recover?!  That will be a game time decision later today (5/14/26) when this show gets on the road!  They're thinking about 11am?!    

I was put on the heart and liver transplant list April 6th of this year!  We were told that it could be up to a 2 year wait, but less than 2 months later - here we are!  We got the call about 8pm last night (5/13/26) and were told to start making our way to Children's Mercy Hospital in KC, MO.  We started frantically packing and quickly saying our goodbyes as we made it here about 1:35am!

Thank you to everyone for all for your love, thoughts, and prayers - God is Good.  Please also remember the individual and their family that is making this possible - we love you and pray for you!  THANK YOU, THANK YOU, THANK YOU to this family - we don't even know you but hope to meet you some day!  Time to try and get a little shut eye! 


  

7 comments:

  1. Hey friends! Was shocked to see this early this morning! 🤯 Keeping your sweet family close in my thoughts and prayers today and in the coming days. Love you guys mucho!

    ReplyDelete
  2. We will be lifting you and the donors family in our prayers. We love you guys

    ReplyDelete
  3. So happy for you!!! You are a warrior and this is going to go GREAT!! We love you Kaylee

    ReplyDelete
  4. I'm praying for you, your family, and your medical team.

    ReplyDelete
  5. Prayers to you all!! Much love from the Hughes Family!

    ReplyDelete
  6. Continued prayers for your body and all involved in this process.

    ReplyDelete