Go Mack Go!

 7/6/22 

After All the Waiting...

We know some of you have been waiting for an update since July 1, but we have to! Since the last update, we have been walking the in-between with Macklin, praying that his new pulmonary hypertension drug efficiently impacts the blood vessels in his lungs and relieves pressures in his heart.

We had a peaceful weekend full of lots of cuddling with Macklin, but other than that, there wasn't anything to report. We, unfortunately, didn't get to do much 4th of July celebrating as the parade was rained out one day and we were all sleeping during the two nights of fireworks -- but we're ok with that.

We did get all his tests (ECHO, MRA, MVV) scheduled over the weekend though and it all happened yesterday. When we arrived at the hospital this morning for rounds, we finally got the run down and the report on all we had been waiting for.

Prayers Answered

The biggest number we needed to see fall was the right ventricular pressures of his heart. These had previously been in the 110+...and the ECHO came back yesterday that the new drug had worked successfully and his new pressures were in the 60s! PRAISE THE LORD! 

Currently, they have him classified as "moderate" pulmonary hypertension (PH). There are three levels -- mild, moderate, and severe." It is early in the game still, but there are hopes that he could be weaned off of this third drug (epoprostenol, aka Epo) and the blood flow to his lungs could function well without it. He is also on milrinone. Macklin could be sent home on the Epo but not the milrinone. We hope and pray that he could be weaned off all his PH drugs which would bring his pulmonary hypertension to more of a mild level. Throughout converstions today, that doesn't look like it will happen anytime soon (maybe years), but we will keep praying!

THEN, during rounds his morning, the NICU team all of the sudden said, "And we're going to extubate him today." We were like, "Uh, are you sure? This seems like it is coming out of nowhere?!" But they were like, "Oh yeah, he's ready and we're ready". 

Within 30 minutes, Macklin got the tube pulled out of his throat and was on a new, much less annoying, frustrating, and clunky respiratory support called RAM. Mack was not a happy camper after he was extubated. He roared his little, raspy voice and raised his heart rate and temperature. We transferred him into daddy's arms and he calmed right down and is very much enjoying the new RAM system.

The MRV and MRA came back showing no need for immediate surgery. This is good news. He will still most likely need a surgery before he is discharged, but they will wait as long as possible to do that so Macklin can continue to grow big and strong to take on the surgery.

After the good news and changes today, the charge doctor foreshadowed that because of Mack's improvement, we will be on our way out of the Bay 1 NICU level (which is for the highest, critical need babies) soon as well. That news was bittersweet as we have grown some great relationships with our doctors and nurses in Bay 1, but we also want to keep the train moving for Macklin and get him home as soon as possible.

Overall, we are feeling a "nervous excitement" today. It feels good to finally have some good news and movement in the right direction. Prayers have gotten us there, Mack Attack has gotten himself there, and we continue to pray God will continue healing Macklin so we can go home soon (soon is relative...we really have no idea what his timeline looks like). Today marks 4 weeks that we've been in the NICU at UIHC, and on Friday Mack will be 1 month old. It's crazy how fast time marches on.

Specific Prayer Requests:

  • For a miracle, that Macklin's pulmonary hypertension would completely go away, as well as his Vein of Galen Malformation. 
  • For Macklin's body to continue heading in the right direction, that the blood flow to his lungs would continue to recover, that his VOGM would subside his threat, that he can continue dropping medical supports to move closer to being self-supported.
  • For Macklin's growth, that his feedings would help him grow big and strong and help his brain and body develop normally.
  • For the teams of doctors, that all of their knowledge and support for Macklin would fluidly come together for his best care and best direction for recovery.
Ways to Support
1) Prayers as noted above!
3) Venmo (@corynikkel)





Comments

  1. Nancy LoweJuly 7, 2022 at 2:22 PM

    Praise God for his progress! I'm continuing to pray!

    ReplyDelete

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