Jerry and I had a long talk with Charlie’s Cardiologist and his Nurse Practitioner to make sure that we understood his condition and what our choices were. They showed us the numbers of antibodies in his labs and how much they would have to go down to be listed for transplant. Some were at nearly 20,000 and needed to be below 5000 for UCLA. Stanford requires they be below 1000. Not only his antibody count, but numbers of antibody types were steadily increasing. Charlie’s heart went from being paced by the defibrillator 2% of the time to 100%. We spent a lot of time thinking, researching, and praying about whether or not we should try to go for a 3rd transplant.
Charlie’s toenails started turning gray last week – a sign that his blood is not circulating well. They turned up the defibrillator from 70 to 90 beats per minute. We finally made the hardest decision any parent can make for their child. We decided that we would take our chances with the heart that Charlie has. He needs miracles either way. We will enjoy the time that we have together, rather than spend it in separate states wondering if a heart will come, and if it does, how long it will last and if the heart that he has now would have given him more time instead. We were running out of time and finally had to choose a path.
April 20 they will put in a new pacemaker. The defibrillator he has now only has one lead to the left ventricle. It only goes one speed, whatever they set it on. They were afraid of putting in more leads and taking up the room in the vein in case we went for transplant. Now that we have made our decision, they will put in leads to the left and right atria as well. It will make his heart work more efficiently with his body and provide synchrony between the atria and ventricles.
Charlie is still doing well. His heart function is still good. He still feels pretty good and doesn’t show any real signs of slowing down. He is still in school and happy to be with his friends and teachers every day. He also has a bit of a crush on his school nurse.
I’m starting to write down his favorite things. He loves zigzags, dinosaurs, firefighters, fire safety, safety signs, hotels, dancing to the YMCA song, his copy of a painting of my step-brother’s two dogs, and the scene from the Spongebob movie where an old lady offers Spongebob some ice cream and turns out to be the tongue of a monster fish that tries to eat them. It makes him laugh hysterically every time. He loves to share the Chinese words that he’s learned from Ni Hao Kia-Lan. And he loves a girl named Leah.
Charlie has funny little autistic rituals. He plays with drinking straws, spinning them until they make a funny noise. Every night, he puts them on the piano just right, along with his glasses. He turns off the fish tank light, locks the front door, kisses Dad goodnight, walks to the hallway, and then tells me it’s time to go to bed. He stands in front of his bed, makes sure his shoes are lined up, then picks up his Spongebob microbead pillow off the floor with his left hand, just right, or he has to do it again. Then he climbs into bed and I tuck him in. Then he asks, “What are the towels doing?” (he has a zigzag towel and a polka dot towel that he also loves.) We both say, “Sleeping.” Then I turn out the light and he says, “I love you.” And I say, “I love you. Sweet dreams!” and close the door. It’s the same every night. When children are little, mothers often wish they would stay little forever. In many ways, Charlie has done that for me.
