Day 5 Updates

 6/13/22

Let's start with the good stuff today. 

*Courtney got to hold Macklin yesterday! Our nurse snuck in and said children are never allowed to be held in a situation like Mack's, but they pulled some strings and made it happen for us. We were so surprised and the hour and a half Courtney got to hold him was so refreshing. AND his vitals were actually better than they have ever been as he relaxed within mama's embrace. We are grateful.

**It's Keira's birthday! She turns two today, and we were able to celebrate her birthday last night with our immediate family. Our empty tanks were refilled with joy and hope again as Keira played with her cousins, danced the night away to "Wheels on the Bus", and dug into her cake and ice cream. We are so thankful for Cory's brother and his family who drove from Sioux City to be there, Courtney's brother and sister-in-law who graciously hosted tons of people, Courtney's sister and brother-in-law who rushed over from a busy weekend of wedding activities, and all the grandparents who keep showing up and helping out in invaluable ways. We are blessed.

***The third success story from yesterday was the continued outpouring of support and conversation with Dr. Orbach, a specialist on Vein of Galen Malformation (VOGM) from Boston's Children's Hospital. I noted yesterday that it was a miracle just to get on the phone with him... but he didn't stop there. We were able to get him all of Macklin's tests and images, and overnight, he had reviewed them all and called us again to give us an update and breakdown of what he sees. 

And again...he didn't stop there. He graciously connected with our Neonatologist (NICU team) and a Neurointerventional Radiologist (surgery team) here at UIHC to collaborate with them and share his expertise and what he sees in Macklin's case. That just doesn't happen overnight in the medical world people...so again, we can't stress how much of an answer to prayer this was, how rare it is, and how beneficial it is for Macklin's situation. We are thankful.

We Have A Plan

The plan going forward comes in three parts. The fact that still exists even in this plan is that the odds aren't increased yet. We still have a 50/50 shot of medical success with the VOGM.

  1. Phase One: They have been keeping something called the patent ductus arteriosus (PDA) open on Macklin with some fancy NICU drugs. This artery typically closes off after 2-3 days in an infant, but it has been necessary to keep it open for Macklin in order to get blood to the rest of his body because his VOGM is pulling so much of his blood flow into his brain.
    1. So -- the first phase is to wean him off those drugs today (6/13/22) and see how his body reacts. If his heart and body can handle it closing, and all goes well, we move to phase two. If he can't, he goes straight into emergency surgery to address the VOGM.
  2. Phase Two: Macklin has been intubated since about two hours after he was born. This has allowed them to ensure he gets the oxygen and respiratory rate that he needs to remain stable. They also have used this to control his breathing in a way that makes him still feel like he's in momma's belly. If he passes phase one, phase two will be to remove the intubation and see if he can properly regulate his respiration and oxygen on his own. He actually has been doing this like a champ so far, so we are hopeful on this one, but again, if it doesn't go well, he will go straight into surgery on the VOGM.
  3. Phase Three: If we make it through all of the above without any surgery, then Macklin will need to get some consistent brain imaging done over the next few days to ensure that the outrageous flow of blood to his head, the condition of his heart, and the oxygenation through the VOGM isn't damaging his brain tissue any further. If it is, he'll need to go into immediate surgery. If it isn't and his brain remains healthy, well...then we have some decisions to make like a possible trip to Boston for surgery or many others that we probably haven't even thought about yet.
Phase One started last night as they slowly weaned Macklin off of the drugs to keep the PDA open and start to allow it to stiffen and close like what usually happens in infants. As of 11:00 am this morning, he is completely off the drug and now it is a waiting game for the next two days to see how he reacts. We have no doubt that the Mack Attack will be all over it!

Specific Prayer Requests
  • For a miracle on Macklin's next exam, they could see complete healing like they have never seen before.
  • For Macklin's heart, brain, lungs, and other organs will be able to handle the PDA closing and we will not need emergency surgery.
  • That if we do need emergency surgery, everyone on the teams can make it, be full of stamina / wisdom / preparation / and precision so that we have success in embolizing the blood vessels of the VOGM.
Upcoming Support

After some coaching from our families and our connection to a mom who also had a son with VOGM, a GoFundMe page is being set up for us. We have been so blessed by the support and prayers, and we've also just not known what we need right now. The GoFundMe will allow anyway who wants to give and support Macklin as this journey continues. You can look for that tomorrow sometime!

Thankful for everyone praying for him and reading this!



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