I apologize for the delay in my update but it’s been a whirlwind week for us. Monday night a little after 7, Dr. Lebovitz (Dr. Dan) came into the room and said he had spoken to Dr. Boyle and based on preliminary tests thought they may have a heart for Zoe. There were more more tests that needed to be done but so far it looked like a good match. I woke Mike up and jumped on the phone to put the family on notice. A little after 10 Dr. Dan made another appearance to tell us he had just spoken to Dr. Boyle again and the heart was go. We had finally found our perfect heart and the Clinic was sending the team to go get it. The tentative surgery time was set for sometime between 2 and 3am Tuesday morning. Zoe was taken into the O.R. at 3:30 on December 2nd. There were nurses dancing in the isles. Me, Mike, his parents, his girlfriend, my mom, my dad, my sister, my brother & my best friend Elizabeth took to the waiting room. The heart got off the elevator ar 5:30am (it was in big cooler and accompanied by 3 people, but Zoe thinks it’s funny that her heart got off the elevator). Around 9am we were told the heart was in, they were going to do a transesophageal echo (echo through the esophagus) and if it looked good they were going to take Zoe off bypass and get her closed up. A little after 10am we were told the surgery was over, it went smoothly and they were going to get her settled into her room and come get us. We finally got to see her around 10:45am. She was still intubated but the number of IV’s she was on had dropped in 1/2. Her stats were good and the entire team was pleased.
They extubated her (took her off the vent) on wednesday. They removed the chest tubes & PIC line on thursday and she sat up and dangled her legs off the bed for the first time. Today she got a sponge bath and her hair washed. Her A-line (IV line in the brachial artery of her arm, used to draw labs from and monitor blood pressure) was removed today before her “spa day” and she put on regular pj’s and got out of bed to sit in a chair with me this afternoon. She stood up for the first time this evening and I have say she reminded me of bambi.
She has a long road ahead of her with physical therapy and cardiac rehab. Once she gets moved from the ICU she will start all that. She has alot of muscle weakness and reminds me of a newborn again. She can’t sit up on her own and she has trouble holding her head up. She has some mucus buid-up in her lungs and the best way to get rid of that is to sit up straight, take deep breaths and cough. The Dr’s are pushing her pretty hard but her recovery will go smoother the faster she gets up and gets moving.
She’s tired but has her sence of humor back. She told her dad yesterday he is getting fatter (hahahaha) and she and her nurse today had a growling contest which ended with Zoe dissolving into silent giggles (her voice is still pretty raspy from 2 weeks on the vent).
We don’t have donor information. We don’t know how old the donor was and we don’t know where it came from. At some point we will be able to write a letter to the donor’s family. How do you thank someone for giving your child a second chance at life? I’m sure I’ll figure out a way.