Post-Op #2 Update

 6/18/22


Surgery Round 2

An empty room speaks your thoughts the loudest. Sitting in this room was really hard for us yesterday as Macklin entered into another day of surgery. We were full of less emotion and more numbness this round. When your conversations are full of statistics of survival, complications that occur, and that there is no real progress that has been made, you just start to feel numb to it all.

We were able to go out to lunch for some different scenery as they prepped Mack for surgery. He went down to the surgery room around 1:00 pm yesterday, surgery began at 2:00 pm, and he finally made it out and back up to his room around 6:00 pm.

The surgery team was really excited about the results of the day. They told us they were extra aggressive this round because they had missed one chance the day before and really wanted to see a difference for Macklin. They were able to do five successful embolizations! This put the total up to seven over the course of two days. They noted they could see some really good change in the brain and really hoped it translated to his heart.

They did note that during one of the embolizations, the catheter tip (surgery tool) broke off and lodged in a vessel in Mack's front right brain. We knew this was one of the risks of surgery because the embolization glue is so sticky that sometimes the surgery tools get caught or broken in it. The result was or will be a stroke for Macklin. We won't know for sure what this impact is until we get some more imaging of his brain next week. The good news they tell us is that the best time to ever have a stroke is under two years old because the brain is malleable and can overcome any possible damage that may occur and rewire itself to compensate and never know the difference. We pray this is the case for Macklin.

The Follow-Up

The first thing they do to see how much success the surgery had in Mack's heart is an ECHO. This measures his heart and the blood flow through it. When we arrived this morning, Dr. Ortega (the main surgeon) met us and briefed us on some of the results they saw. His conversation, combined with the rest of our teams, show that the first picture of Mack's heart we have doesn't show much, if any change at all. There is still blood flow going the wrong way at an alarming rate, his heart is still enlarged in some areas, and nothing seems to be fixed quite yet.

This was a bummer to hear.

The hope that lingers in that news is that sometimes we don't see the changes right away. The main goal for Macklin over the weekend and into next week is to decrease the fluid in his body. With all his lines hooked up to him and surgery fluids, he has puffed up like a water balloon. He currently weighs about 11 lbs. He was born at 7 lbs, 11 oz. So they are working hard at getting rid of all the extra fluid in the hope that his body then can function more efficiently so we can see the true impact of the surgeries on his heart and blood flow.

Back to the Waiting Game

So, for now, we wait. Wait for the fluids to drain, wait for the next ECHOs to show a change, wait to see how Macklin responds, wait to see if we need another surgery next week. All the waiting.

It's a really hard spot to be in after so much action and no real results. It puts us in the same situation we were in when we arrived in Iowa City 10 days ago -- we just don't know what to expect and all the looming bad things out there still exist as threats.

Hope in the Lord
Romans 8 has been an anchor for us throughout these past few days. We encourage you all to read it as it is grounding in much of the unknowns we encounter in life, and we know all of you reading this exist with your own version of pain, struggle, or suffering.

We talk to Macklin all the time about the fight he is in now, and how often times, that fight doesn't come until later in life, but that he's only going to be tougher because he is going through it right now. We know too that Mack's situation is a consequence of the sin that exists in this world and that suffering is to be expected. We were never promised an easy go this side of heaven. Because we know that, we have great hope in the Lord to pull us through, to pull Macklin through.

We are continuously humbled by all of your support, love, and prayers. The power of prayer has protected Macklin through this life-threatening journey, and we know it will deliver him from it. Thank you for all the love, we are truly, deeply grateful.

Specific Prayer Requests:

  • That a miracle can still occur by God relieving and realigning the mess of arteries in Macklin's brain, giving him instant relief in his body and regularity to come in his health.
  • That Macklin's body can expel the extra fluid at a safe rate and show us where he is really at so we can make the best decision for his journey forward to being a healthy baby.
  • That the work the surgeons did in his brain arteries would pay off and show great relief to his heart and give Mack the chance at being stabilized rather than in crisis.
  • That any side effects of a possible stroke would not hinder Macklin's ability to grow and develop like a normal child.
  • That we could figure out what to do with the PDA and for the right time to close it so there are no extra risks incurred.
  • For mom, dad, sister and our families -- that health would remain, joy tanks would be filled, and peace would overwhelm us.

Ways to Support
1) Prayers as noted above!
3) Venmo (@corynikkel)

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