GarvinStrong

03/14/2026

Hey y’all, just wanted to give everyone an update on James. He’s doing good and has recovered from the surgery really well. He got the catheter out yesterday and we’re monitoring him for any issues using the bathroom and fever for the next few days.

We got so much info from the pulmonology visit on Tuesday. James has Ciliary Disfunction and likely Asthma (but they mimic and will be treated the same). Imaging and testing showed he has edema in his lungs, both bottom lobes are collapsed, and his brachia’s have congestion. We will have to travel back for a procedure for this on 7/8. Until then, he will need to do airway clearance at home with a nebulizer, inhalers, and pulmonary PT. This is likely the cause of his grunting and is why he always appears to be breathing more rapidly or harder.

They pulled labs for allergies too because his Eosinophil IgE markers were elevated and have been elevated almost every time the test is run, indicating he has allergies and can be a contributing factor to his grunting and pulmonary congestion.

The pulmonologist also referred us to see an Otolargology and GI for when we come back in July. We’ll see them on 7/6, 2 days before the procedure to establish care so they can do a triple scope on James. She wants to check his throat to make sure there isn’t any issues to his Larynx from being intubated so many times and for such extended periods of time. They also want GI to scope scope him to evaluate for reflux and from his right-sided stomach and malrotated intestines.

Boston has been good to us but we sure are ready to get home!

03/06/2026

Hey y’all just wanted to update everyone. We were discharged and are settled into the apartment. He’s still pretty sore so he’s not doing too much moving but he’s very glad to be out of the hospital.

We’ll just be taking it easy for the next couple days. Hoping his pain gets better soon so he can get around and play.

03/04/2026

Update on James:

Surgery went well. We’re back in recovery now and waiting for an inpatient bed.

03/04/2026

James was wheeled back to the OR at 8:30 this morning and we got the first update from the OR around 10am.

They’d justed finished the laparoscopic part of the procedure and moving on to the invasive part. The OR nurse said they were beginning the incisions and that James is doing good.

I’ll make sure to edit this post as updated come in.

Thank you all for the continued thoughts and prayers.

03/03/2026

Hey everyone!

We made it to Boston on Sunday and got settled in. There is a LOT of snow around and we’re expecting 1-2 inches today too. But, the roads are clear and the kids love it.

We have a full day of appointments today and surgery day is tomorrow. Please continue to keep James and the surgical team in your prayers.

Praying for a successful surgery with no complications and a smooth and easy recovery. 🙏❤️

I’ll be sure to keep everyone updated on here.

02/28/2026

We’re sad we missed the Lowcountry Heart Walk this year. But thankfully, we got a pic of James on the screen though.

Hopefully we’ll make it next year though 🤞

02/25/2026

02/21/2026

We got good news this morning and Boston Children’s pulmonology department was able to work James in during our stay next month . 🙌

This means we’ll be able to see each of James specialities and hopefully not need to travel back to B*H again until next year.

So the countdown officially begins, in exactly 1 week from today, we’ll be heading to Boston. Send prayers our way for safe travels, a successful surgery, and for answers to many unanswered questions.

02/16/2026

Sharing is caring, so pass it on please💙❤️

02/14/2026

James’. Heart defects invlude DORV, pulmonary atresia, malposed great vessels, and interrupted IVC.

All of these are considered rare:

Double Outlet Right Ventricle (DORV) is a rare, critical congenital heart defect occurring in approximately 1 in every 6,000 to 10,000 live births.

Interrupted inferior vena cava (IVC) with azygos continuation is an extremely rare congenital vascular anomaly, affecting approximately 0.3% to 0.6% of the general population.

Pulmonary atresia is a rare and critical congenital heart defect, occurring in approximately 1 in every 6,700 to 10,000 live births.

Malposed great vessels is an exceptionally rare condition where the arteries are in the wrong place, but connect to the correct ventricles.

Heterotaxy syndrome is a rare disorder characterized by abnormal laterality in the body's organs. The incidence is reported to be about 1 in 10,000 live births and accounts for approximately 3% of all congenital heart disease (CHD).

Thinking about how rare James is amazes me. He is truly amazing ❤️💙!

02/13/2026

I got a message from Boston Children’s.. they were able to get James into see immunology while we’re there in March.

The Heterotaxy Coordinator is waiting to hear back from pulmonology but we’re hoping to be able to see them while we’re there too. James has been grunting when he lays or leans back for close to a year now... They’re wanting to see if this could be pulmonary related instead of heart related. So, fingers crossed they can work us in so quickly so we can hopefully to find answers to cause of his grunting.

01/27/2023

Welcome, I've had so many people reach out wanting updates on James and asking if I was willing to create a page they could follow to keep updated on our little warrior! So here is it...
If your unfamiliar with James and his story, here is our story and journey so far..
While pregnant, during one of my scheduled ultrasounds the tech asked me to hang tight so she could update the physician. While I sat and waited I knew something wasn't right.. after what felt like hours the physician came in and told me that James has some complex issues. Heterotaxy, being the obvious issue (heterotaxy is a very rare condition where many organs in the body can be formed abnormally, in the wrong position, or even missing) James' stomach was on the wrong side of his body, his liver was midline, and they didn't believe he had a spleen. He then proceeded to tell me that they also saw some serious issues with James' heart. From there we had extensive testing which confirmed the Heterotaxy diagnosis and James' complex heart issues, which include DORV, malposed great vessels, and pulmonary atresia. When James was born he was rushed to the PCICU and underwent his first open heart surgery at 5 days old. All went well and as planned with the surgery however, his post-operative was complicated by NEC (and very serious infection of the gut that can is caused by being intubated for a longer period of time). After a long 8 weeks we were discharged home. Since being home we have been admitted back 5 times due to complications/viruses.
James is scheduled for his second open heart surgery (where our surgeon will upsize his Shunt and do some work on his pulmonary vessels.. which is ultimately the same procedure he at at 5 days old). This will allow more time for James to grow, get larger and stronger before his "Total Heart Repair.. It's not certain how many OHS James will need but we are only hoping 3.
This journey hasn't been easy but we are SO thankful to have James. He is the sweetest and happiest baby despite his complex issues.
We would love for you to follow along with us on this Journey with James. And we ask to keep him and our family is your prayers!