Who is with Khadees?

         “Who is with Khadees?” seems to be the question of the last couple of months.  Unfortunately, for safety reasons, Khadees cannot be left alone.  While we continue to hope and pray for the best, someone needs to be with him in case his life vest alarms from a lethal heart rhythm.  If Khadees is unconscious and unable to respond to the life vest, it will deliver a shock to hopefully fix the arrhythmia.  If he is unconscious, the next step is to have whoever is with him call 911.  Thankfully, this is something we have not experienced.

        With all going on, I still have to work full-time and we have decided to keep the kids in all of their activities to try to keep their lives as normal as possible.  (Khadees will need me most post-transplant and I want to make sure I can be there as much as possible when we get to that point.)  As a family of 5, our schedule has always been chaotic.  For summer, I had a spreadsheet of which child was at which summer camp, what needed to be sent with them for the day, which activity (if any) they had after, and who is picking up who from where.  This was updated frequently since Khadees and I both had work schedules that changed often.

Fortunately, we’ve had family members and friends step up to help us. Khadees’s parents and siblings live locally and we’ve had additional family members fly in to help.  My mom came first, then followed by my Aunt Sharon (“Auntie” to the kids), and now my dad.  Since Khadees has to have someone with him at all times, we always need an adult at home with him.  (Side note, if anyone figures out a way to clone themselves, I am signing up for that right away!  But to be fair, I’ll let my clone work, while I take an 18-hour nap to start…) 

We understand that all who come to help, walk into unknown situations each time.  While I would like to say we have the most well-behaved kids in the world, they are young kids and trying to emotionally process so much, which has led to acting out, melt downs, and attachment issues.  The kids are working with the Child Life team at Advent, which seems to be helping and then will continue with therapy. We also don't know when Khadees will be in the hospital. If there are any signs that he isn't doing well, he needs to be checked out. If he becomes less stable, he potentially would need to wait inpatient at the hospital until a heart becomes available.

            My poor dad came in the middle of Khadees’s last hospital trip.  The handoff for that one was quick and contained just the most important details.  (Allie didn’t have summer camp that week, Kellan and Stella had separate ones, gymnastics, piano, reading tutor, supervise the kids brushing their teeth, vitamins at night, just keep them safe, use your best judgment, call me for whatever you need, etc. and, “Good luck!  May the force be with you!”)  My dad pointed out later, I left out one of the most important details… Monster Spray.

            Yes, Monster Spray.  (I did mention our life is chaotic, right?)  When my brother and I were very little, my mom had “Monster spray.”  I believe at that point it was a cleaner or air freshener.  So, if we were scared at night, she would spray it and it would keep all the bad things away.

Our kids are much like their mother and easily afraid of everything.  Kellan is too smart for that, so I had to get a little wiser.  To get them to sleep at night, we have a special “Monster Spray” to keep away monsters, ghosts, goblins… basically anything our kids could be afraid of that night.  This special spray (a room spray) couldn’t say “Monster Spray” because then the Monsters would know what it is, and try to get rid of all Monster Sprays!  The spray always smells good, because Monsters like things that smell bad!  Also, you have to keep Monster Spray a secret, because if they find out about it, then they’ll definitely destroy all sprays left!  You don’t want the wrong person to find out and say something where a monster can hear…they might not be as secretive about it as you are.  (Have I mentioned that my nursing background started in Pediatrics?)  

So the first night my dad was here and Khadees and I were at the hospital, he did so great.  The kids were picked up, fed, teeth brushed, and ready to go to bed.  So my dad goes to tuck them in, and Stella asks about the Monster Spray.  He is quickly filled in by the kids about the Monster Spray.  So he sprays it twice.  Stella quickly tells him, “Noooo!  It needs to go everywhere!”  My dad says he then walked all over our upstairs performing an exorcism spraying room spray going “no monsters tonight!”  I nearly died laughing when he told me.  

Then, 3 hours later, Stella is crying at his bedroom door (she’s been having nightmares).  “Okay, do you want to sleep in here with me?” he asks her.  He then told me he now knows where all of the money we’ve invested in Stella’s gymnastics has gone.  He said she flipped back and forth all night (even claims she picked his nose with her toes at one point).  When morning came and he woke her up for summer camp, she said, “Papa, it can’t be time to get up.  We’ve barely slept!”  Thanks, Dad for all the comic relief!  (Monster Sprays pictured below!)