Cardiac Appointment

January 17, 2023

Today I took Zeke to his first outpatient appointment at the single ventricle cardiac clinic. The team in this clinic have followed Zeke since he was born and after surgery our care transfers over to a cardiologist who follows Zeke till he’s 18 but since we are moving provinces and don’t have one yet they are keeping Zeke on and looking after his care. This has been so helpful for me as I’ve built a relationship with the nurse practitioners and cardiologists in this team. It’s also been an easier transition for us because they know Zeke so well.

From a cardiac perspective Zeke is doing well. But there is the trauma he needs to overcome from all that he has gone through manifesting in different aspects of his little life. He startles easily at loud noises and will not have anything near his mouth. This aversion is the result of having the breathing tube in for a long time and the constant suctioning he had done down his throat and nose. Because he won’t feed orally he has an ng tube to administer feeds. If this persists for a while the team have discussed having a gtube surgically inserted into his tummy to administer feeds. This is something I’d like to avoid. Pray for my heart to continue to trust God’s timing for Zeke’s oral feeding.

Please pray for our transfer to the Children’s Hospital to go well. For Zeke to get connected to the right therapists to help with weaning of the ng tube, neurology and occupational therapy. We have the thrombosis team next week and an ultrasound for his clots. Please pray for the med weans to continue to go well and for me to be patient as we are close to moving back to Calgary.

Romans 15:13 “May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.”