Roller Coaster Ride

 8/7/22

New Findings

Friday felt like a roller coaster ride. We were mentally and emotionally being pulled along as we ramped up for another surgery for Mack. We prayed over him, said see you in a bit, and watched him be wheeled out to the cath lab.

Within two hours we got a call that the procedure was over. This was unexpected as we were told it would take 4-5 hours that day. We rushed back to his room from our waiting spot and were able to talk with the pediatric cardiologist who did the procedure.

The first goal of the procedure was to do a diagnostic test that is the most accurate way to get all the pressures of Macklin's pulmonary system. Our prayer in that test was that they would not find any need to put a stint in Mack. That prayer was answered.

The surgeon told us his pulmonary veins looked great and there was no need for a stint at all. Secondly, he said something that caught both of us by surprise, so much so that Cory asked the surgeon to repeat it two more times. Dr. Aldoss said, "There is hardly any pulmonary hypertension due to resistance in Macklin's system. What we continue to see is a high flow causing issues from his Vein of Galen Malformation."

And that's when we felt like we rushed down the pinnacle of the roller coaster and began the series of loopy-loos.

So What Does This Mean...

We asked that question a lot over the next two days, and the answers we got in return were, "We don't know...we're stumped...we're not sure yet."

Essentially, the past month of Macklin's life has been primarily focused on trying to attack the resistance from pulmonary hypertension, but the diagnostic test came back saying that PH is there, but due to flow, not resistance. This makes us both frustrated and relieved.

Frustrated, because we feel like we wasted a month trying to attack something that doesn't really exist.
Relieved, because if Macklin could live a life without any significant PH, that would be amazing.
Frustrated, because we are in a spot with no answers again and feel like we're just going in circles.
Relieved, because we didn't have to put in a stint and monitor it every six months for the rest of Mack's life.

It's a roller coaster ride.

We Don't Know Yet

What we do know is that the conversation will be turning to Macklin's VOGM a lot more in the future. We are actually slated to have a virtual call with Dr. Orbach (Boston Children's Hospital VOGM expert) to talk about his idea of a treatment plan for Macklin next week, so it is good timing that we can talk to him amidst this new information.

One thing we do know is that a medicine called Milrinone is actually helpful to Mack. This is one he had on earlier but that he can't go home on. We had taken it off and that's when his pressures skyrocketed and they got concerned and sent him to do invasive diagnostic testing in the cath lab. There are a couple other options of medications like Milrinone that can be given orally, so we'll have some discussions and trial and error in our future around what's next for Macklin in this area.

Overall, we don't know the full magnitude of what we learned on Friday yet. There are lots of teams that need to talk to each other and get from "stumped" to "we know what's going on." We've learned quickly in the NICU that these things take time even though we want to move fast. The best thing we can do is advocate, ask probing questions, and make the doctors think, while we do our own research and consulting.

Macklin turns 2 months old tomorrow. We've spent 60 days in the NICU with him so far, and we're unsure of how many more days or months are before us. We know, too, that the roller coaster ride won't end here. On Friday we were grieving the backward steps we had to take, grieving the loss of the hope we had in our hearts -- today, we are filled with more hope than we could have imagined two days ago.

Life is a lot like that. It's a roller coaster ride, full of unforeseen whiplash and sorrow, as well as thrills and joy. No matter the ride, we know we have an unshakable foundation in Jesus that allows us to embrace both the sorrow and the joy with the same approach through the hope and love of God the Father.

1 Peter 5: 6-7, "Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you."

Specific Prayer Requests

• For Macklin, that the next ECHO shows absolute healing in Mack's body.
• For clear direction and answers for Macklin's medical team as they sift through confusing data and a case that is not easy to understand.
• For communication between the teams of doctors and us as a family, that we can all get on board with a clear direction for Macklin to get better and get home.
• For Macklin's eating, that he can continue to grow his strength and take on full feeds.
• For our family, that we can continue to have peace through these days of traveling back and forth and taking on new information about Mack's health every day.