Surgery Rescheduled - 6/15/22

 6/15/22

Surgery Rescheduled

At 9:00 am today we received a call that surgery wasn't going to happen at the original time of 10:30 am due to not having the right pieces of the team assembled. Although frustrating, we know we want the best for Macklin. We waited around for a good part of the day thinking surgery may still happen but eventually got our answer that surgery was moved to 7:30 am on Thursday, June 16.

The Hard Stuff

Some of the hard stuff about this process is starting to hit us. Today, Mack turned a week old. He should be in our arms at home, he should be crying bloody murder for more food, he should be doing tummy time on the ground while Keira tries to move him around, we should be at our home, we should... we should... we should. It's hard to stare that stuff in the face when you instead stare at cords and listen to beeps for a majority of your day.

We also have started wishing other things on Macklin... we wish he had ____ instead of Vein of Galon Malformation (VOGM). We wish he had ____ instead of a life-threatening surgery. We wish he had _____ instead of looming brain damage. 

It's easy to get caught in that thought pattern and hard to get out of it. But we've been doing our best to stay optimistic and look for the goodness of God in all we are going through.

The Good Stuff

Our families have been stellar. I can't think of a better support system around us to get us through this time and bend over backward to accommodate us no matter the cost to themselves.

Our friends, have shown up, taken over, sent love and support, and kept checking in time and time again. We couldn't stay in the positive lane without them.

Our circles, have blown our minds with their love, support, and prayers. I mean, have you seen the GoFundMe and what can happen in a day? We are humbled. We are grateful. We are speechless. And we can't thank everyone out there for their love and prayers. They truly mean more to us than you may ever know.

Reality

Because surgery was pushed back, we got another chance to hold Macklin today. This really is the nurse's call if we can do it or not, and all our NICU UIHC nurses have been so gracious to allow us to hold him and spend 20 minutes on each side of giving and taking Macklin from us in a chair to move his cords and do all the things that really are a hassle. Even so, they continue to bless us with this special time with Mack.

Today, the Neurointerventional Radiology (surgery team) spoke to Courtney in length about the procedure tomorrow. Let's just say...Macklin isn't an easy case. It's going to be intense and risky and everyone is on high alert. But we need to do it. The consequences of not doing surgery are worse than trying. 

The other reality is that Mack is going to need an estimated 8 surgeries to get this whole VOGM taken care of. That's a lot of risk for a little guy. It won't all happen at once, and by God's grace, it can happen over a year or two, but this next week is going to be crucial to his success.

After a successful surgery tomorrow, the next part of the game is to monitor how the blood flow changes in his body. When you seal off a few veins in the brain, the blood has to go somewhere else. The hope is that it goes where it needs to go (calmly through the left aorta and efficiently into the rest of his body and organs). If it doesn't go to the right places, we got problems. 

More than likely, Mack Attack will have 2-3 surgeries in the next week to try and stem off the majority of the problematic blood flow. This should buy us time, save his heart and brain, and give us some options for what we want to do next.

We write this to you tonight in faith that he's going to make it through all of this, and he faces odds that are not in his favor. This is why we choose to believe in a big God that surpasses all odds and all our understanding.

Specific Prayer Requests

  1. For a miracle, that we could arrive at the hospital early tomorrow morning and they'd be amazed at how Macklin's veins in his brain realigned and sorted themselves like they should be.
  2. For our doctors, that they are full of wisdom, clarity, precision, and tender care. That together, all five teams we have, will bring Macklin out of this first surgery with no consequences to his body or organs or future.
  3. For Macklin, that he may continue to be the brave, big, and strong boy that the NICU and his parents see him to be. That he would mightily enter this battle and win it, and come out unscathed and in a better place.
  4. For Cory and Courtney, and all our family. Tomorrow is going to be hard. Sitting and waiting and not knowing what's going on behind closed doors for hours. That the peace of the Lord would settle on all of us as we await Mack's delivery from surgery.
Again, we are so thankful for everyone on team Mack Attack. Your prayers are tangible to us, your support is overwhelming, and we could not ask for better people to be loving and cheering on our son Macklin.

Lamentations 3: 22 - 26

    

"The steadfast love of the Lord never ceases, his mercies never come to an end; they are new every morning: great is your faithfulness. “The Lord is my portion,” says my soul, “therefore I will hope in him.” The Lord is good to those who wait for him, to the soul who seeks him. It is good that one should wait quietly for the salvation of the Lord."


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

 


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