2HeartsAreBetterThan1

       A few important updates.  First, and most importantly, Khadees’s Epic picture has changed again!  When his humor is back and has the will to make others laugh, I know he’s doing better.  We have been moved back to GT7, where we know and love the medical team.  Khadees has been up and walking laps, even walked up and down 2 flights of stairs.  Over the last 10 days, he has pushed through all the pain and done everything that has been asked of him. Khadees had his first heart cath and biopsy on Wednesday.  Unfortunately, it showed 2R rejection, which means his body is rejecting his new heart.  To combat rejection, the steroids and anti-rejection medications were increased and new meds added.  While this is scary for us to hear, his doctor said he’s not super concerned.  Some forms of rejection, especially within the first year, are normal, and they found this prior to Khadees experiencing any symptoms of rejection....

  For those of you who know Khadees, you know he has a wonderful sense of humor and likes to keep those around him laughing.  When he was on GT7- Advanced Heart Failure Unit prior to surgery, he was bored.  He realized from the patient portal online, he could change his picture in the EMR system (Epic).  Every few days, he would upload a new selfie, each one as silly as the last, with the goal of making anyone who opened his chart laugh.  A couple of days prior to surgery, he changed his profile picture to the one below.  5 minutes after, admitting called him.  “Sir, are you okay?  We saw your picture in Epic and it looks like you’re screaming.”  Khadees had to explain he’s been changing it every few days to entertain the medical staff.  Almost every person who has opened his chart since then have all said the same thing.  “We love your picture in Epic!”  The story has been told many times over the last 3 days.   He h...

       Post-op day 1.  Wow, I like this countdown much better!  The last 48 hours have been such a whirlwind.  The kids were able to come see Khadees the day of transplant, prior to him going to the operating room.  Child Life was able to visit and provide the kids with some activities to help decorate Daddy’s new room, including a heart pillow and heart ornaments.  On the ornaments, the kids used their thumb print to make one half of the heart and Khadees’s thumb print to make the other half.        Child Life was able to answer questions the kids had prior to surgery.  Kellan wished for his daddy to get a heart on his birthday on Tuesday, and he is over the moon his wish was granted.  (He did tell me he was confused at how it worked though, because he didn’t blow out any candles.  He also made sure to point out that I had the same wish for my birthday, but it came true for him.)  Allie still has ...

  118 days since listed.  147 days since diagnosis.  Today is the day.  We’ve thought about this day, prayed hard for this day, and it’s finally here.  Early this morning, an EKG tech came in to do a stat EKG.  We thought something was wrong with his telemetry, because we know he had been having some arrhythmias.  About 10 minutes later, the charge nurse and others were in his room to draw blood.  They let him know they might have a heart for him, but they weren’t sure yet.  Being in the hospital, sometimes they’ll still call the patient directly, and other times you find out from UNOS.  His nurse said that she was charting and 54 orders popped through for him.  Chest x-rays were done, MRSA swabs, Covid test, and his pre-surgery shower.   In the middle of this, he called me and let me know that they thought they had a heart and were going to prep him for surgery, but we had no idea of the time of when surgery would be....

  For the continued countdown, it has been 112 days since Khadees has been on the transplant list.  141 days since we first found out his diagnosis.  I’ve been meaning to post all week, but sometimes writing it all out makes it all seem so real.  There are some nights that I sleep at home instead of the hospital, and when I first wake up in the morning, I assume he is in bed next to me and our day is going to start normal, with normal functioning hearts.  Then, I realize the body next to me is any one (or all) of our kids that managed to sneak into bed with me in the middle of the night and that Khadees is still in the hospital, still waiting for a heart transplant, and that we are currently living our worst nightmare. Khadees has been in the hospital since November 2nd.  With the continued issues he was having with his PICC, we needed to figure out another option.  Our amazing hospitalist pulled out all the tricks and even managed to get a dermatology...

  It has been 105 days since Khadees has been on the transplant list.  134 days since we first found out his diagnosis.  We continue to wait, continue to pray, continue to hope.  This week, he went back to the hospital due to issues with his PICC line.  We have tried everything (and I’m so thankful for the suggestions we have gotten from friends in the medical field, thank you!)  We’ve tried different dressings, different agents to clean, different agents to help it heal, gauze, etc.  Nothing has worked.  He finished a round of antibiotics Wednesday, the same day he was re-admitted and started on IV antibiotics.  The only saving grace is the last blood culture has no growth.  He is currently active on the list.  The Wound Team was consulted and a miracle happened to get a Dermatology consult in the hospital as well.  Things were all moving in a positive direction, with lots of good ideas to potentially prevent needing a new PIC...