If you're not following Todd’s journey at www.caringbridge.org/visit/toddbeckva then you missed what happened to yesterday’s plan with Cody right after I posted. I wasn't actually done yet typing my thoughts but posted anyway so that I could call 911 for Todd. Todd and I have been at Lynchburg General Hospital since. 

I'm so thankful that my parents live so close and were at our house even before the paramedics arrived. I left to follow the ambulance with Todd, and my parents stayed to take Cody to his appointment at UVA (1.5 hours away). I’m also thankful that I had already had an extensive conversation with Dr. Schneider on Monday about what would most likely be the next steps after Cody's appointment, so there wasn't a lot of pressure on my parents to relay new details or ideas.

During the conversation on Monday Dr Schneider had prescribed two drugs that Cody has been on before: Budesonide/Entocort, a steroid, and Lasix/Furesomide, a diuretic to help get the fluids down. (Not sure why the Furesomide wasn't prescribed in the ER.) I chuckled and confessed that on Saturday when I had seen Cody's swollen abdomen, my eyes glanced over to the counter at Todd's Furesomide which he had been prescribed in Honduras. My eyes kept shifting from Cody to the medicine and back again while I contemplated taking the matter into my own hands. I even googled about its dosaging based on body weight. BUT I was a good girl and knew better than to mess with prescriptions, so I stopped myself and started the communication with the on-call docs instead. On Monday when  Dr. Schneider prescribed that med at the same dosage I had thought, I was surprised at how happy a little interior win, never acted upon, made me feel. What a much-needed confidence booster after swimming (or sometimes it feels like drowning) in questions, doubts, and decisions over Todd’s care for the last 10 months!

Back to yesterday: The fenestration is almost completely closed off, and so far obviously closed enough to be causing issues that will not resolve themselves. This happened when Cody was 2 years old and led to complications (Protein Losing Enteropathy) that resulted in multiple months in the hospital and a very scary (i.e. out of the ordinary) heart cath surgery. It was like a ghost town the day of that cath with so many from the cardiology teams and staff/students watching it, including the open heart surgeon just in case he'd be needed in an emergency. BUT that was 13 years ago... 

I was told when Cody was a newborn that as he gets older and his heart-needs change, the medical world will have been advancing through those years too. And that is very true in this case!

There's a new device that has been approved for use in Europe and that has principal investigators for it in the U.S. at Denver and John's Hopkins. AND - God is SO good!! - one of the pediatric cardiology doctors at UVA came here from Denver so has experience with it! https://occlutech.com/afr/ (click the "International" link on the homepage to see more) This AFR device wasn't actually created for fenestrations, but they have found it works well for that purpose too. It needs to be “ordered” and logistical details need to be coordinated, but it looks like - if all goes well - that Cody will have a heart cath in a few weeks to have it implemented. 

Cody was concerned about missing his play practices and performances, but it will most likely be just one overnight stay after the surgery. And the anticoagulant used after device implementation is just Aspirin, which Cody takes daily already, so that was good news too!

In the meantime we keep Cody on those new additional meds and hope he starts to feel more comfortable from the pain he is still experiencing. Thank you for all the love, prayers, and support! ❤️