Back to Surgery

 8/4/22

Test Results

On Monday, Mack had his most recent ECHO after two of his three pulmonary hypertension (PH) medicines had been weaned off. Clinically, he was looking really good, so hopes of the ECHO coming back with lower pressures and affirmation that we're heading in the right direction filled our thoughts. We didn't get a call until late Monday night about his ECHO, and the doctor told us that some of the results were inconclusive and hard to read.

The next morning there was more to the story, and they had discovered a pulmonary vein looked stenosed. A quick anatomy lesson for Macklin's case is that pulmonary hypertension is a condition where the blood vessels going into the lung from the right side of the heart are thick and muscular creating difficult flow and circulation of the blood, thus causing strain and extra work on the heart. This most recent ECHO revealed that one vein that leads out of the lungs to the left side of the heart is also thickened and too muscular, creating a new diagnosis of pulmonary vein stenosis. Basically, all the blood vessels to and from his lungs are at risk in his current state and in his future.

Quickly, the pediatric cardiovascular team arrived at Macklin's door on Tuesday to perform a more intense imaging ECHO that allows them to see the backside pulmonary veins better. This test confirmed there was great concern for his anatomy and that surgery to fix it is the best route.

Glass Half Empty, Glass Half Full

This news comes with a lot of emotions and perspectives. Within hours of scheduling surgery, Dr. McNamara (the world-renowned hemodynamics doctor) had texted Cory to set up a call after landing in some other country where he is going to give a big-time speech. Dr. McNamara talked with Cory on the phone two hours later and walked through how Macklin's body may have arrived at this point.

The quick lesson is that they only check these veins once a month, and because of the Vein of Galen Malformation and Mack's added PH, the backside pulmonary vein stenosis is a predictable consequence, and surgery to insert a stint into the vein to keep it open at the right size is the best route to fix it.

This news sucked to receive. We were so close to talking about going home, so close to having our family united together for the first time, to getting back to normal life again...and it was all washed away after one test. We were confused too that we had never heard about these backside pulmonary veins being an issue. In many ways, it felt like the month of June all over again when we had two successful surgeries on Mack's VOGM and then he was diagnosed with PH. It's just another round of another mess to fix, and it sucks.

At the same time, we are so glad this issue was discovered. If we hadn't, we most likely would have come home and Macklin would have gotten really sick or his heart would have gone into failure suddenly and there would be no way to save him. Through the procedure tomorrow, we can also do a detailed and accurate diagnostic testing of his pulmonary pressures to give us more information than we've ever had. So, although these steps backward make it feel like our glass is half empty, it's also half full. Mack can do this, he's a fighter, and God will see him through.

The Surgery

Macklin is scheduled to go into surgery at 3:00 pm on Friday, August 5th. He'll have to be intubated again (tubes down his throat) and sedated. He'll stay that way through recovery until he is steady enough to be extubated. This means all the things we had like nursing, bottle feeding, cuddling/holding whenever we wanted will have to be put on hold. There's also chance his surgery may get bumped to Monday because he's the last one of the day, but we're praying that it can go on as scheduled.

There's lots of risks in this surgery just like his embolizations for the VOGM, so we find ourselves back in the worry and anxiety of sending our baby off for hours into surgery praying it all goes as planned.

Romans 5:3-5 really sticks out to us right now as we enter into tomorrow. We know suffering is a great teacher and it has taught us much in this journey with Macklin. Tomorrow is a day of perseverance. We have a battle to fight and we want to see Macklin through it. And even though the hopes we held so close to our hearts earlier this week are gone for now, we have an unshakable hope to cling to in Jesus Christ, that no matter the outcome, he is Lord of all.

Specific Prayer Requests:

• For a miracle, that during the diagnostic test in his heart they would see that he is completely healed!
• For the surgery, that it would happen on time, and that the doctors would be full of wisdom and precision, that they could enter into his heart safely and navigate his veins and arteries without any harm or negative outcome.
• For Macklin's body, that it can withstand all the fluids and drugs that come with a heart surgery and also recover quickly from it as well.
• For our hearts and minds, that within this risk, great reward would come, and that peace and patience would fill our thoughts.