Oh how good is our God

A huge praise report, Zeke had his neck ultrasound this morning and we got confirmation that the blood clot in his jugular vein does not have an arteriovenous fistula. This was a great relief for us and the team. The thrombosis team will meet us tomorrow to discuss what follow up is needed for Zeke. They want to continue to investigate if Zeke has a blood clot disorder as he’s gotten clots every time he’s had access lines. This is helpful to know as Zeke has future surgeries that will need good access and it’s important to know where he has limited access.

Neurology will be following Zeke as well to monitor the bleed in the front of his head. The CT scan from Tuesday showed that the bleed has increased slightly and we will have a meeting tomorrow to determine the implications of this for Zeke. We also noticed that he can’t keep his head up for very long so neurology will assess if this has any neurological implications. Please pray for continued healing in Zeke’s head.

We are still working on helping Zeke gain weight as he’s lost quite a bit and trying to wisely consider a g-tube to help with his nutrition. There are waitlists to getting a g-tube. Our hope is that eventually Zeke would eat on his own and not need an ng tube or g-tube but we also want him to thrive. Please pray for the wisdom to know what to do based on the knowledge of Zeke’s hard iv access as a g-tube would require iv access and sedation. As always we are trusting for God to continue to be at work in Zeke and our lives and our hope continues to be in him for all things.

Romans 8:24-29

“For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? But if we hope for what we do not see, we wait for it with patience. Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God. And we know that for those who love God all things work together for good, for those who are called according to his purpose.”