Fearfully and wonderfully made

Today was a good day for Zeke as he’s officially off morphine and we have started the clonidine wean. The plan is to continue to work on Zeke weaning and gaining weight. The team has scaled back the diuretics which we hope will help Zeke gain weight. The goal is to eventually be off diuretics. Unfortunately, Zeke did not get the head CT today because the plan has changed from him having it awake to needing sedation. This changed everything and the team had to weigh out the risks involved with sedating Zeke. The head CT will be tomorrow morning at 8:30am. Please pray for a successful CT with no complications with sedation.

We also had a very good meeting with Dr Seeds and Dr Floh. Zeke will not require an intervention right now with all they’ve done in the cath lab. The goal is to not operate as he’s already gone through quite a bit. The two stents right now are sufficient for his anatomy and will continue to be monitored. Eventually Zeke will need more heart surgeries but the goal is to prolong the time between those surgeries for as long as possible. The team has expressed that it is clear that Zeke is a very fragile boy and has severe complications with his congenital heart disease that will constantly need to be monitored over the course of his life. He has limitations with what they are able to do and some of those limitations will only become apparent when a crisis arises. He is not a candidate for ECMO if ever we got to that point. Their goal is to give him longevity with the heart that he has.

Ben and I have known Zeke had a fragile heart but the extent of how fragile was revealed with this hospital visit. We’ve always desired a long life for our boy and will continue to entrust him in the hands of our heavenly Father. He remains our beautiful gift from the Lord and we will endeavour to steward and shepherd him as best as we can. We will continue to trust God with every medical decision we need to make for him and continue to believe and hope for a long life for Ezekiel Jabulani. When we dedicated him at church the last Sunday I was in Calgary we read Psalm 139:13-17. This Psalm is fitting for our boy and reminds us that God made no mistakes with Zeke. All that he has gone through in his little life will be a testament to God’s glory and is for our good as we always keep our eyes fixed on Christ. Please continue to pray for us as we still have a few things to navigate with Zeke, his head CT, a gtube insertion and the many follow ups from the various disciplines.

Psalm 139:13-17

“For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works;my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them. How precious to me are your thoughts, O God! How vast is the sum of them!”