Another Trip to the OR

 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 things to catch up on, I have been trying my best to stay on top of things.  The kids have continued their activities.  Kellan has another piano recital this month, Stella’s competition season has started, and Allie is ready to follow Stella’s footsteps (or is it handprints since she walks on her hands more than her feet these days?)

Our youngest has regressed and refuses to sleep at night, so I’ve been battling with a 2 year-old on a nightly basis, and surviving more on caffeine than sleep most of the time.  It has been reminding me of what it was like to have a newborn, but Khadees was healthy and able to be of help.  Also, while on maternity leave I was able to nap.  Now, Allie still gets the naps and I just get all the coffee.  So, those moments where the house was finally quiet and I could think and write, I’ve chosen to sleep. 

But that brings us to this week.  Earlier this week, Khadees felt off.  As a nurse, I hate this description.  What do you mean off?  That’s not a feeling, that’s not a symptom, I need more.  He felt dizzy, but not just when switching positions from lying to sitting or sitting to standing.  Just random bouts of dizziness.  He noticed shortness of breath and exhaustion.  Then, on Wednesday he started having swelling in his feet and abdomen.  The swelling continued to worsen throughout the week and he gained 5 lbs overnight.  He's had ongoing GI upset (probably from medications) but that has continued to worsen. On Friday late afternoon, we found ourselves back in the hospital.  

Since transplant, he’s had a pericardial effusion, which is fluid around the heart.  This is somewhat normal after a heart transplant (think of the major surgery) and usually resolves on its own.  But, Khadees’s has been getting worse, especially over the last week.  There’s not an exact answer as to why this is happening.  Tomorrow morning, Khadees will be taken to the OR to either have drains/chest tubes placed or a window (an incision where he was first opened to open the sac and drain the fluid).  

Khadees is nervous of the unknown and going under general anesthesia.  The last time he went under was for the heart transplant, and the biopsies have all been done with conscious sedation.  We won’t know much until after tomorrow, but we continue to be hopeful this is a small hiccup and he will be back home and on the mend shortly.  We are so thankful for all of the prayers and ongoing support we have received.  We know that those thoughts and prayers are moving mountains.  Oh, and for those who are wondering, Khadees has changed his Epic picture once again!