The One Where Dookie gets a Heart (PART 2)

     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 no idea of what is happening, but was super excited to see Khadees.  Stella had a million questions for Child Life and the Advanced Heart Failure team when they rounded, but Kellan is now 10 and knows everything, so had very few questions but listened very intently to all answers Stella received.  Also, major shout out to the amazing doctor who got down on Stella’s level and listened intently and answered her questions.

Stella’s biggest questions were, would Daddy’s new heart love her since it didn’t know her?  Yes, he will always love you, no matter what.  Then, her biggest question (which she’s asked a few times) was if a person needs a heart to live, and Daddy’s heart has to come out before the new one can go in, won’t he die?  We explained to her that a machine would do the work for his heart, which led her to ask to see the bypass machine.  So, we pulled up a picture and Child Life explained how this would work.  Her sweet little brain was spinning, as they had previously discussed the 4 chambers of the heart and everything the heart does as a 4-bedroom house.  Now turning it into a machine with circles, took her a minute but she eventually was satisfied with the answer.  We explained that when she saw Daddy next, he might look different, with lots of different tubes and his new room might have lots of different machines.  She, of course, wanted to see all of the machines then, but Ms. Erin from Child Life promised her she would take pictures and explain them all to her before she saw Daddy next.  

Side note, Stella now says she wants to be a heart doctor when she grows up.  We explained that it is a wonderful job, but she would need to go to school for a long time.  She shrugged it off and said, “That’s okay, I’m going to be a beam or a vault coach while I’m in college.”  (Sorry, Coach Kelly, she has no interest in choreographing a million floor routines!)  Kellan has also said he wants to be the doctor that does surgery on the hearts, but I think this stemmed from visiting a friend’s house who is a surgeon and has like 100 bedrooms (Kellan’s words).  I’m still not entirely convinced he’s given up on his dream of becoming a Pokemon Scientist.

I have never felt so many emotions at once, not even pregnant.  I was so happy, excited, nervous, grateful, sad for the donor family, thankful, and more all at once.  I cried so much on and off during the day, that I was probably clinically dehydrated by the time he went for surgery.  Telling him goodbye and walking to the surgical waiting room was probably one of the most gut-wrenching and difficult things I’ve done.  Bless my brother for being there with me during that and staying with me for that first hour after.  The poor guy tried his best to have conversations with me, as I was exhausted and incredibly emotional, with 800 thoughts running through my head all at once.  He switched off with my friend, Evelyn, who stayed with me all afternoon/night and kept me sane until Khadees was up in the Surgical CVICU.  

While today was rough on Khadees, he did incredible.  He was weaned from sedation and frustrated with the ventilator and breathing tube.  He was able to be extubated late this morning and switched to high flow oxygen with nitric.  He’s had fevers most of the day, but it finally broke this evening.  They sent off blood, urine, and sputum cultures and started some antibiotics prophylactically.  

He did everything he was asked today, including working with Physical Therapy to take a few steps around the room and sit in a chair.  He’s been using his Incentive Spirometer.  Our nurses and RT tell us that he is doing exceptional.  He is exhausted and in some pain, but he is working through it and is sticking to the goal he set prior to transplant, to be out of the hospital by December.  (Of course, this is all dependent on how he progresses and if there are any complications and he understands this).  There is lots of hard work ahead for Khadees.  

I am so incredibly grateful to his hero, whose heart now beats in Khadees’s chest.  It is not lost on me, that while yesterday was one of the greatest days in our lives, that it was one of the worst days for another family.  Many have asked if we know who the donor is or what information we know.  The donor family can choose to disclose their information to us if they decide to.  Some choose to and some do not, and many decide to let time pass before wanting to know.  Social work will help Khadees and our family write letters this year if the family wants to receive them.  Whatever the family decides, we are incredibly grateful and will keep them in our prayers every day for the rest of our lives.  

Many are asking how they can help or what we need.  Our biggest request is prayers for our family and the donor’s.  Aimee re-started the Meal Train to help with meals, which is such a huge help to us!  My mom is here helping with the kids (a complete rock-star who will be taking on Kellan’s birthday party tomorrow).  The kids are also off school all week for Thanksgiving Break, so she has definitely jumped in headfirst.

We are so thankful for each of you.  For each person who has read the blog, sent us a message, prayed for us, given our kids extra hugs or even extra grace, brought me coffee (and yes, I swear a rice crispie treat and coffee is a solid breakfast.  Thanks, Sara!)  Every ounce of support we have received by the amazing tribe that surrounds us is so incredibly appreciated.