All Roads Lead to Surgery

 8/16/22

Since the Cath Lab...

On August 5th Macklin had a procedure in the pediatric cath lab where they intended to collect the most accurate data on the pressures of his heart through diagnostic testing as well as place a stent in a pulmonary vein. By the grace of God, Mack didn't need a stent, and we learned a lot about the state of his heart.

Since that day, the conversations with the teams of doctors have been burdensome and endless. The result of the diagnostic data led the doctors to believe that Macklin needed another embolization surgery again as soon as possible.

This was hard news for us to hear. Days before we had been dreaming about going home -- had seen the finish line in our view, and now we had to shift to thinking about Macklin going back into an incredibly risky surgery like he had back in June to save his life.

Boston or Bust

When we were told that Macklin needed another major surgery again, our efforts pivoted quickly to trying to get Macklin transferred to Boston Children's Hospital so that Dr. Orbach could do the procedure. We had been working behind the scenes with Boston already before we got this news, sending them all Mack's images and medical records so that we could continue conversations with Dr. Orbach as well as learn what it would look like to do any future surgeries out there once Macklin made it home.

Well, that all collided at once when UIHC told us he needed surgery. We already had a meeting set with Dr. Orbach on the 15th, so we asked the doctors for the time to get to that date so we could talk with Dr. Orbach about the possibility of Macklin transferring. Things got a little tense as UIHC wanted to intervene sooner and we wanted to get Mack to Boston for the surgery. Mack did great at remaining stable as we finally had the meeting with both UIHC and Boston Children's.

Dr. Orbach confirmed on the Zoom call that Macklin did indeed need surgery and needed it as soon as possible. He also was sorry to tell us that his schedule and travels did not allow for Macklin to come to Boston at this time, so we needed to move forward with doing the surgery at UIHC.

It was pretty surreal that a weeks worth of trying to prepare for an immediate transfer to Boston was settled in a matter of minutes on a Zoom call. We can't quite put into words how the past week has felt -- but the best analogy we can muster is the a whiplash feeling, like you're on a rickety wooden roller coaster getting thrashed back and forth and the entire ride is bumpy and uncomfortable. That's what it felt like.

But -- we heard what we needed to hear -- we're staying in Iowa City and we're having surgery as soon as possible.

All Roads Lead to Surgery

At the end of the day, for Macklin to truly get better at this point, he needs the embolization surgery again. The diagnostic testing showed us that his pulmonary hypertension would improve, his breathing would improve, his strength and stamina would improve if we can just slow the flow of the blood rushing out of Mack's Vein of Galen Malformation.

Dr. Orbach noted that Macklin's journey is typical of children with VOGM. Often, he said, they look like they get better after the first couple surgeries and predictably, 3-4 weeks later, start showing signs of heart failure again due to the blood flow picking back up again. Macklin fits that profile perfectly. His pressures and heart health drastically improved for 3-4 weeks before signs of heart failure started up again.

So, to surgery we go. The hope is for this surgery to be this week Thursday, August 18 but we don't have a confirmed time yet. If not Thursday, they will do it on Friday.

This type of surgery doesn't come without extreme risk. As we noted back in June, it's 50/50 that Macklin comes out without complication. The surgery is extremely difficult and it takes place in the brain, so the stakes are high. It brings back a lot of bad memories and worries for us as we approach this next surgery. Yet, we know that Macklin must have this surgery to get better and have a chance at coming home. And, we know that God goes before us, has everything in his hands, and is near to our precious Macklin in these hard times.

Join Us In Prayer

Please join us in prayer in preparation for the surgery and on Thursday during surgery. God has graciously answered so many prayers for Mack, and we know that so many of you have him daily in your thoughts and prayers. They have brought us so far in this journey, and we are so thankful.

Psalm 34:17, "When the righteous cry for help, the Lord hears and delivers them out of all their troubles"

Specific Prayer Requests

  • For a miracle, that Macklin's VOGM would disappear and his entire body be remade with a healthy cardiovascular system.
  • For the doctors, that God's wisdom settles on them as they make decisions on how to take care of Macklin before, during, and after surgery.
  • For the surgeons, that their hands would be steady, judgment would be sound, and God would guide their work to complete healing for Macklin.
  • For Macklin, that he can continue to be the warrior that he is, taking on this surgery just like he has the others, that his body would be able to take on the surgery machines, fluids, and anesthesia with no issues or complications.
  • For our family, that God's peace would fall on us, that we would put complete trust in him, and surrender all our hopes and fears to his throne.









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