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2 Steps Forward, 3 Steps Back
6/25/22
The Past Few Days
Sorry for the delay on this blog. We try to update it every two days now that we're in more of a steady-state with Macklin, but the past few days got filled up quickly with new doctor meetings, time with Keira, and exhaustion that led us to falling asleep way earlier than normal.
Three days ago, it felt like we were taking some steps forward and lots of hope started to fill our hearts. The blood pressures and fast flow were down after his two surgeries, his umbilical lines were going to be removed with no impending surgeries in the future, and they were going to start feeding him mom's milk.
A couple of those things did happen -- his UVC and UAC umbilical lines were removed (which means we get to hold him again!), and he started receiving mom's milk via his feeding tube. The pressures of his heart though, not so good.
3 Steps Back
All the ground we thought we were gaining was quickly taken away with the official diagnosis of what we didn't want to hear: persistent pulmonary hypertension (PPH). This can come in many different forms and have lots of different results.
In Macklin's case, they believe this could be a consequence of the Vein of Galen Malformation (VOGM) in his development. Because the VOGM was taking so much blood flow and affecting the function of the right side of his heart, it could have weakened and prohibited the vessels in his lungs from developing correctly. The second idea, which is what we've been pursuing more the past few days, is that the VOGM, PPH, and possibly other vein issues we don't know yet could be a result of a mess up in Macklin's genetic coding.
The spectrum is wide within Macklin's diagnosis of PPH. It could be as easy as some nitric oxide to open up and relax the blood vessels to restore them to their original build, and it could be as limiting as his lungs just weren't created with the proper blood vessel system and this could result in putting extreme pressure on his lungs and heart and not make it through this.
We, of course, were praying and hoping for the easiest part of that spectrum, just like we did with the VOGM, but early results coming back so far is that isn't the case.
He's been on nitric oxide for three days and we're yet to see any change in his blood pressure and lung function, and they've already added another drug in his IV line to go along with it. We'll have to wait through the weekend and for the results of another ECHO before we can see any change.
Learning
The Chief Medical Officer of the NICU, who is a hemodynamic expert (blood flow team), sat down with us yesterday to talk over Macklin's peculiar case. He was wonderful at teaching us all about the interventions for Mack and his heart/lung/brain make-up.
The best lesson he gave us was that blood pressure = flow x resistance. The original issue with Mack was the extremely fast flow he had because of the VOGM. After two surgeries, they were able to decrease this dramatically. But then the high pressures came back again. Through their ECHOs and world-renown hemodynamics team, they could see the flow was fixed but now the resistance was the issue. That resistance is coming from Macklin's lungs where the blood vessels are too stiff, possibly not developed correctly, and thus putting more pressure on his heart.
Where to Go From Here
We don't know. After lots of action in the first week, it's turned into a major waiting game. All the steps now will be to figure out the seriousness of Macklin's PPH and what it will take to fix it. There are lots of levels to this that will most likely take weeks to figure out. This means he'll remain intubated and not get to the levels of freedom and release we were hoping for.
Yesterday, we felt the wind in our sails leave. The momentum we had for a couple days subsided, our hope was diminished, and new realities and confusion set in. The journey to attack and fix the VOGM was exhausting, and we thought we had gotten through the hard stuff, but yesterday brought forth another adversary in PPH. It is really hard to gather our strength, face the new battle, and ready ourselves to fight a new opponent.
So We Press On
Even as tired and worn out as we are, Macklin continues to amaze us with his resilient spirit and toughness. We're over here fighting the emotional and mental battle, but he's doing the real work and always knocking it out of the park. He rises to every challenge, is always well-behaved, and is a favorite of everyone in the NICU. He is a rare gem and so many people are learning and growing because of him, both medically and spiritually.
Phillippians 3:12 -14, "Not that I have already obtained this or am already perfect, but I press on to make it my own, because Christ Jesus has made me his own. Friends, I do not consider that I have made it my own. But one thing I do: forgetting what lies behind and straining forward to what lies ahead, I press on toward the goal for the prize of the upward call of God in Christ Jesus.
Specific Prayer Requests
- For a miracle, that Macklin's arteries and blood vessels would rearrange themselves into perfect harmony.
- For the vessels in his lungs to awaken and grow, causing a reduction on the pressure to his blood and heart. For the medical interventions to work, and for him to quickly grow out of this issue.
- For his gut, to efficiently take on the new food and digest it.
- For his brain, to be protected and continue to develop normally, that no more seizures would occur, that no negative consequences would come from the possible stroke he had during surgery, that his ventricles would get rid of fluid efficiently, and that the VOGM would be significantly reduced.
- For mom, dad, Keira, and family -- that we would gain new wind in our sails, that Christ's endurance would fill us deeply, that we'd find joy in the difficult routine we now live in.
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