The One Where Dookie Gets a Heart

 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.  I received his call at 12:49am, quickly woke up and frantically ran out the door, thinking of what this means for our family, as well as what this means for the donor’s family.

When I got to the hospital, we still hadn’t heard anything about an ETA for surgery.  We tried our best to rest and sleep, as we knew the next few days could be very long and challenging.  Obviously, resting after receiving news like that is easier said than done.  Our coordinator called us at 6:30am, to tell us they had a heart and the surgery was set for 9pm tonight.  This means that the donor will be coming off life support today.  Later, surgery came in to tell us it will probably be earlier, between 3-6pm.

I think back to my days as a bedside nurse.  When a patient is taken off life support and donating organs, we would have an Honor Walk.  This is when the staff of the hospital lines the hallways to support the family and honor the donation they are making.  In the hospital I worked at, one of the nurses had an amazing voice and would sometimes sing prior to the family walking.  The family would say their final goodbyes to their child and walk with them as far as they could.  As a nurse, as a mom, this always crushed me that a family was losing their baby.  In the worst moment of their lives, they chose to donate organs and save others.  

Over the last 118 days, this is something we have discussed often.  For Khadees to live, another family will experience tragedy.  We have continuously prayed for this donor family and his new hero.  Today, we continue to pray.

We’ve had some amazing nurses on the floor here.  When change of shift happened this morning, we had lots of nurses in here crying and hugging, and celebrating with us.  The support we have received from the team here is beyond amazing.

The kids are going to come see Khadees early this afternoon and Child Life will meet with them.  Tonight, Khadees will have the best nap of his life and tomorrow, the hard work begins (stole your words, Skylar, you hit it on the dot).  The surgery can last up to 12 hours.  Most patients wake up shortly after surgery, but for others it takes days.  Most don’t remember the first few days post-op.  From what I am told, he will come out of surgery on ECMO and with chest tubes.  He will be expected to walk within 24 hours, and the first few weeks will be difficult.  There will be pain, but he will need to push through for the best possible outcome.  Once he doesn’t require CVICU, he will come back to the Advanced Heart Failure Unit. 

I don’t think I’ve felt so many emotions all at once, even pregnant.  We are beyond thankful, incredibly nervous, sad and grateful for the donor family, and scared and excited for the road ahead.  Most of all, we are super thankful for the support we have received from our friends and family.  We love you.