Homeward Bound and Grateful

It’s been a while since my last update and we’ve had a few appointments since discharge and a few infections as well. All in all we’re so grateful to be on the other side of Zeke’s hospitalization. He has been cleared by cardiology, hematology and neurosurgery as stable enough to fly home and have the Calgary team take over care. We’ll be followed by all the same clinics with a few new clinics added on. The hope is to fly home this weekend.

This was a rough admission but one that has shed further light on the state of Zeke’s heart. The team has always told us that Zeke’s heart was complex but more so now with the collaterals he’s developed to compensate for his SVC syndrome. We’ve also always known that Zeke would need a couple more surgeries to replace his valve and conduit when he was older however that won’t be the case. In addition to those surgeries he’ll need more for the stents that are now in his heart. We now know that at some point Zeke may need a heart transplant but when is unclear. The goal is to help Zeke keep his current heart for as long as possible as heart transplants for kids with his complex physiology are difficult.

We don’t know what Zeke’s future looks like or when his next heart surgery will be. Dr Honjo, Zeke’s surgeon and the rest of the team are hoping that his heart will last at least a couple of years without needing surgery. This would be ideal for Zeke to grow and get bigger and stronger. One thing Ben and I are certain of is we’re limited in our understanding and knowledge of the future but God is sovereign and in control. We are entrusting Zeke in his hands and do not lose heart. 2 Corinthians 4:16-18 reminds us that “though our outer self is wasting away our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.”

Thank you saints for praying for our family. Please continue to pray for Ezekiel and our hope is to continue updating here as much as we can and share Ezekiel’s story. A huge thank you from our family to all of you and praying God's blessings on you all.