Test Results

 6/28/22

Long-Awaited Test Results

Since our last update, we've been awaiting Macklin to undergo a couple more tests to show how he's doing in the current care pattern he is in. He had a long, relaxed weekend where mom and dad got to hold him and the teams of doctors stayed away. It was nice to get some extra time with Mack, to hold and read to him, but it also felt weird that nothing was happening. After such a rush of information and action the first two weeks, it was really our first slow period of time.

Test 1 - MRI: Mack hasn't had an MRI since the first few days he got here. After undergoing two major brain artery surgeries to reduce the Vein of Galen Malformation (VOGM) and being at risk for a stroke from those surgeries, we haven't seen any updates on his brain.

Yesterday, the Neurology team (brain team) came in to review Mack's MRI. A total of five people came into the room, which normally is concerning because you think oh it's bad news, but with Macklin, he's such a rarity, most people are there to listen and learn.

90% of the news was great news. They even let us use the word "great" instead of good because Mack's tests showed no extra damage and a small decrease in the VOGM. That was GREAT news! The only outstanding 10% is area of concern around one artery that could either be a blood clot or just a passage that's flow was reduced so it looks different than the first scan. Their inkling is slow flow due to the type of surgery Macklin had. 

What about the possible stroke? Well, we learned when you do an MRI 7 days or later after the event (surgery), it's really hard to see if a stroke occurred or not. If it was a major stroke, you'd see it. If it was minor, you wouldn't. But for Mack, they can't see anything and are leaning towards he didn't have a stroke at all. THIS IS AN ANSWER TO PRAYER! We will continue to praise God for that result.

Mack's next step for his brain is to be hooked up to an EEG machine which will monitor his brain for seizure activity. Before they wean him off of any neurology support, they want to be absolutely sure his brain function is stable. This machine is annoying though with endless wires, glued-on probes all over his head, and can get in the way of Mack being comfortable and us holding him. So -- the sooner we get it off the better!

Test 2 - ECHO: Mack has gotten an ECHO almost every day of his life so far. ECHOs are run by the hemodynamic (blood flow) department, and Macklin is one of their favorites. He's always been cooperative for them, and because he is a rarity, his ECHOs are studied by everyone at the end of each day. The Chief Medical Officer for the NICU is a world-renown hemodynamics doctor, so Macklin is getting some special attention and study into his blood flow every day. We have learned quite a lot from this team about Macklin.

The biggest fight right now is the battle against pulmonary hypertension. That feels weird to say being that the VOGM is how this scary journey started, and it still exists and will need surgeries down the road. But right now, it's all about pulmonary hypertension. Macklin is currently on two drugs to help fight this, but they aren't doing much. When we went over the ECHO reports this morning, we got really excited because his right ventricle pressure was down quite a bit. When we went to rounds with the doctors though, we learned that although his pressure is better, there are other predictors that haven't changed, so they are upping his dosages. Bummer.

The fight against pulmonary hypertension is going to be a long one. We don't fully understand how serious his condition is yet, but from the lack of movement with the first few attempts of intervention, it's looking like it's more on the side of moderate to severe, which don't have great outcomes in the end.

3 Week Mark

It's crazy to think that tomorrow marks three weeks into this journey. It has gone by so fast and so slow at the same time. It feels blurry and hazy. All the stuff back home in Des Moines seems like a distant world we don't know well anymore. We miss living in our home, hanging out in the cul de sac with our neighbors, going to our favorite places to eat, and having friends over in the backyard. We also miss all the normal routines of bringing home a baby. We miss the nighttime feedings, we miss hearing baby cries, we miss tummy time and blowouts and sibling cuddle sessions and newborn pictures and walks in the park...we're missing all of it. Three weeks is hard, and we know we may not even be halfway through this thing yet.

So We Wait

From here, we continue to wait for the pulmonary hypertension interventions to kick in. We wait for prayers to be answered, we wait for Mack to keep taking steps forward with feedings (he's up to 1 oz every 3 hours now!), we wait for more times we get to hold him in our arms, we wait for more wires and tubes to come off his body, we wait, and we wait upon the Lord.

Psalm 130 is all about waiting, but we specifically like verse 5-6, "I wait for the Lord, my soul waits, and in his word I hope. My soul waits for the Lord, more than watchmen wait for the morning, more than watchmen wait for the morning."

As we have noted before in prior blogs, we have seen God show up time and time again. We have seen miracles and prayers answered, and we expect no less as we journey on. And while we do, we'll continue waiting in the hope that his Word gives us.

A couple songs have really stood out to us lately too, check them out below to fuel your own soul, your own journeys, and your prayers!

Courtney's Pick: In Jesus Name

Cory's Pick: Breathe

Specific Prayer Requests:

  1. For a miracle, that God would open the vessels and arteries in Macklin's lungs, that his heart would function normally, and that his VOGM would disappear in the name of Jesus.
  2. For Macklin's medications to take root, relax his blood pathways in his lungs, and relieve the pressures in his heart.
  3. For no seizure activity or neurology concerns, that Macklin could have a robust neural network and not be affected by the surgeries, medications, or VOGM.
  4. For wisdom, so the doctors can continue to act on the right interventions and understand Macklin's rare case, for us, so we can discern best steps for Macklin's care and where that might be.
  5. For Keira, that her two year old life could be full of joy and wonder, that this temporary time away from home wouldn't throw her out of her routines and away from the people she loves.
Ways to Support
1) Prayers as noted above!
3) Venmo (@corynikkel)




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