A Long Overdue Update

October 24, 2022

It’s been a while since we last posted an update and a lot has transpired. Zeke is now 8 months and is ready for his next staged reconstruction heart surgery where the surgeons reconfigure the heart and circulatory system. Zeke’s congenital heart disease, Heterotaxy right isomerism requires he have either single ventricle or a biventricle repair. A single ventricle repair would require three heart surgeries that allow the one working ventricle to do the work of two ventricles. The long-term problems with single-ventricle circulation involve liver and lung issues and may eventually result in the need for a heart transplant.

On the other hand a biventricular heart repair involves creating two functioning ventricles in a single procedure. The long term outlook offers a better quality of life compared to the single ventricle option. The exact number of surgeries for this procedure will depend on the unique heart anatomy a child has.

I share all of this to give a bit of an understanding into Zeke’s heart defect and what he is likely to face in the coming months. We requested a second opinion from Boston Childrens Hospital and received good news that Zeke is a candidate for a biventricle repair. Not all babies can have this type of surgery as it’s largely based on their anatomy and the possibility for the surgeons to create two ventricles. So we are grateful that Zeke qualifies.

This is great news BUT Zeke needs to get bigger as the biventricle repair that has been mapped out for his heart is quite extensive. His surgeon will need to combine two procedures a baffle (surgically-creating a tunnel or wall within the heart that’ll be used to redirect the flow of blood to achieve a more stable physiology) and an aortic root translocation - moving the aortic root together with the coronary arteries to the pulmonary position to provide a true anatomical correction of Zeke’s ventricle septal defect and pulmonary stenosis.

Each of these procedures the surgeon has performed but never combined. This is obviously worrisome because there are risks involved with each procedure. Our hearts are struggling with what Zeke must go through and yet we know there is no other way but through it. We continue to entrust him to God, knowing He knit Zeke’s physiology together and knows the exact repairs required and the process.

We’ve made the decision to list the house and move back to Calgary. The level of medical care that Zeke needs and accessibility to that care can’t be found on the island and the distance to that care has been too long for us to sustain on a regular basis. Moving again was faster than planned but we feel it best for our family.

Zeke’s care will transfer to the children’s hospital in Calgary with a pediatric cardiologist for his check ups and any future surgeries taking place in Edmonton at the Strollery Childrens hospital. However, for now Zeke remains in Toronto where I have permanently moved with the other children until his surgery. He can’t fly and is unfortunately recovering from back to back viral infections. Hence why we can’t transfer everything now and travel to Calgary.

So there are a few of things that you could pray for us as we are separated with Ben moving to Calgary to start his job November 1 and as I am in Toronto waiting for Zeke’s surgery.

Pray for Ben’s new boss to be extremely gracious and allow Ben to fly back when it’s time for the surgery. His work start date was pushed back a few times and now November 1 he has to start.

Pray for Zeke to recover well in the next 6 weeks. That’s the time period that they’ve given and will check in to see how his lungs are doing and hopefully there is no residual inflammation or lingering respiratory illness from his viral infections.

Pray that his shunt is able to sustain him a bit longer. The hope is the bigger he gets the better his odds with the type of operation he’ll get. Everything hinges on his stats and how well his oxygen levels are saturated. If he goes too low then there is no other choice but to have the surgery.

Pray for our accommodation in Toronto. At the moment we are at an air b’n’b that is quite costly. It’s difficult to find something that is affordable in Toronto. We’re not sure how long we will be staying here but we need something extremely affordable so if any of you guys have any contacts or know anybody who has an affordable space for us to rent out or is just willing to host us it would be greatly appreciated. We will not be able to get into Ronald McDonald house until Zeke is admitted as a patient.

Pray for the sale of our home. We’ve completed renovations and listed. We’re hoping that the house would not be on the market for very long and that God would give us a favourable amount on it.

Pray for our actual move. The movers have collected our belongings and are making their way to Calgary.

And lastly pray for our family. It’s been difficult to be separated. We know Ben needs to work to provide financially but the distance is hard on us. We are trusting the Lord and believe that He knows what we need and so we choose to rest assured in his care that he will provide for all our needs.

I know this is very long but I’m very thankful and grateful for all of your prayers and I appreciate the care and concern that you have each showed us. Thank you just does not seem to be enough but we thank you and we are so filled with gratitude. I’m very thankful to the Lord for the family we have and thankful to the Lord for the body of Christ who have walked through this season with us. Here is the latest picture of our baby boy and his siblings.

I pray this brings encouragement for your soul as it has ours. 1 Peter 5:6-7 “Humble yourselves therefore under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him because he cares for you.”