2HeartsAreBetterThan1

       The last few weeks have brought many more second firsts.  I know, quite the oxymoron, but never would we have imagined that Khadees would repeat his first time driving, first time dropping the kids off at school, first time running an errand, etc.  He is happy with his newfound freedom, and each of the firsts makes me smile.  I think it's a blessing that the kids don’t really understand how profoundly special these new firsts are, how they could have been robbed from it all.  That is never lost on me.      We have been humbled after his cardiac window procedure.  He did amazingly well after transplant, but the little stumble showed us that complications can happen and be completely unpredictable.  We are thankful that Khadees has continued to recover and is continuing to do well.        As he continues to progress in his healing post transplant and now cardiac w...

We are back home! Back to the craziness that is our lives, but very thankful to be home. I wish I could say that Khadees is feeling great and back to his usual self, but that’s not quite the case yet. He has still had lots of pain, as they had to re-open part of his original incision. He did amazingly well after transplant, home within 13 days and very little pain. This time around, after the pericardial window, he’s feeling it. He feels it when he gets up, lays down, walks around. I don’t want to say we are starting from square 1, because we definitely are not, but these are challenges that he wasn’t expecting. He originally went to the hospital for signs of rejection and possible infection, which is how we discovered the growing pericardial effusion. He’s had ongoing GI upset, which can be from one of the anti-rejection meds, Cellcept. There is an alternative, but it’s expensive and insurance doesn’t like to cover it. So, during his hospital stay, lots of tests were done to ...

  This will be short and sweet, but here is a quick update on Khadees!  He likes to tell people he had no pain after his transplant surgery.  I kindly remind him that he was so drugged, he doesn’t remember the days when he had pain, which is a blessing.  I would much rather him remember no pain, than the worst of it.  Yesterday morning, they took Khadees to the OR to drain and possibly create a window due to the pericardial effusion.  They decided to do a window and 400ml of fluid was drained during the procedure, as well as a chest tube placed for ongoing drainage.  Since then, he has been in immense pain.   Khadees has a high pain tolerance and doesn’t like taking any sort of drugs that can change the way he thinks.  Even pain control after transplant surgery was sometimes a struggle, because he doesn’t want to take something he doesn’t need.  However, he has been in so much pain that he has needed every pain medication available ...

  I’ve been behind on updating.  Up until this week, Khadees has done extremely well.  Even as he deals with the challenging side effects of the medications, he has pushed on.  Some days he walks miles, continues to find small projects around the house, and dreams of going back to work and the future.  There have been small victories that we’ve celebrated.  Last week, Khadees was able to get into Allie’s bed to cuddle with her before bedtime.  Her bed is low to the ground, so previously he has been unable to bend and get up due to the sternal incision.  So seeing her face light up as he came into bed to cuddle with her, was a moment I couldn’t help but smile at.  These moments are the ones that make me smile and thank God the donor for the gift of life they have given Khadees. As for me, my fight or flight response was temporarily put on hold.  For so long, it was my driving factor.  However, with a family of 5, work, and many thing...