Josiah’s CTA

Josiah Update (5/2)23):
Josiah is currently back in radiology getting a CTA (it was supposed to be yesterday but cardiac anesthesia was called into an emergency case just before we went back) They are looking at his coronary arteries and the PA bands to see if they want to do another Cath procedure to tune things up again.
Since they have to look at the coronaries, Josiah has to be completely still including no breathing. They had to sedate and intubate him so the anesthesiologist can control his breathing for the pictures. It’s a simple thing, but is still so scary handing off my baby and sitting in a waiting room. It should take less than an hour but the clock could not move any slower.
Other than that, Josiah has had a very uneventful couple of weeks and is doing well. There has been some concern about Josiah’s back. With his situation, it’s very normal to have developmental delays and we are seeing that mostly in his gross motor skills. We’ve noticed his back doesn’t curve like my other babies so they did imagining a couple weeks ago. They think he has a form of scoliosis that affects his lower back. They also noted dextracurvature which means his lower back curves outward instead of inward. They will reevaluate in several months but for now, we’ll just keep doing what we’re doing with PT and OT. He sat up for the first time and that was so encouraging! He’s such a fighter!
We have found a place to live in Colorado and are so excited to move in after we have an idea of when Josiah will be able to come home. For now, we will stay where we are at Brent’s Place so we can stay close. I cannot begin to describe how good and normal it feels to have something to look forward to after so many months of unknowns and disappointment. We cannot wait!
Prayers and praises:
*Praise that we have an incredible team that is able to control so many things
*Praise that Josiah is doing well during this wait
*Praise that we have a plan for after hospital life
*Prayers that the doctors have wisdom and discernment with these scans
*Prayers for our donor family
*Update: he’s out! Tube is out, no ICU time!! Thank you, Jesus!*
-Marissa

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