08/27/2026
Good afternoon Bluestone Family! This is Allee with an update from Dr. Snively! 🩵
Baby Mack Update
Wednesday August 26, 2026
71 days old
This is a long one!
Thank you to everyone who is following our story and for supporting us in so many different ways!
We had our big family/team-meeting today!!!!
General impressions:
The team is very happy with Mackenzie from a growth, heart, and lung standpoint! They love her! And we talked about going HOME!
She needs some meds for her agitation, some of which, the attending doctor thinks is because she’s getting older and is more aware, and thus, is annoyed and agitated by her breathing tube. We get that!
This will ultimately facilitate the best transition for her through our next steps. We want this to a positive experience. You know, as positive as a traumatic first 71 days out of utero can be.
The NICU nurses and RTs have nick-named Mackenzie as their “spicy chicken nugget” because of her sass. She makes it very clear when you’re talking too loud, her diaper is messed, or she is uncomfy. Yes girl! Speak your mind!
Ventilator/BPD status:
Her vent settings are great and have been quite good since her heart surgery last week!
As a BPD (broncho-pulmonary dysplasia) kid, the ENT and BPD team want her minimum oxygen setting to be 40% with no events for a full week before exploring extubation again. Set the clock.
From a lung standpoint, they think she can handle it! So, it’s going to come down to whether her trachea, with all of its scar tissue and stenosis, can handle extubation.
We will leave it at that, as there’s no point in speculating on something we can’t predict the outcome of.
Neurology:
Oh my gosh! We had no idea that we have an expert on genetic neuromuscular disorders, specifically with huge experience with RYR1 related disorders right here in our pocket at UVA!
We had a private bedside meeting with Dr. Cappa and honestly it changed our entire outlook on everything! Nothing about her prognosis has anything to do with her RYR1 mutation! He said her lung disease is her limiting factor right now, NOT her RYR1 mutation! He said she is going to be an awesome spunky child!
***** ❤️ She might have some muscle weakness, but he said she is going to live a beautiful, happy, joyful, full life!!! I am crying as I type this because we were so afraid, and he said not to be! ❤️ ****
He said all of his RYR1 kids are a little extra sassy and witty because they’re never going to be the fastest on the playground, they’re never going to be the top sports star, so they make up for in other ways and she has already awfully sassy! We are so excited to buckle up for a wild ride with this little nugget! She can be a sassy as she wants as long as she is home with us! PRAISE GOD!!
Of all of our team members, we will be seeing Dr. Cappa and the pediatric pulmonary specialist through the neuromuscular clinic for the longest! And we couldn’t be more confident and pleased for them to be our long-term go-to!! He said we are going to be friends for a very, very long time. 💕
PRAYERS/VIBES/ENERGY REQUESTS:
The biggest thing right now is getting that dang stubborn edema down and maintaining her minimum O2 setting
