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He’s a “hard stick”

So… Remember how we said it would be a relatively quiet weekend full of just rest and recovery?

So… Remember how we said it would be a relatively quiet weekend full of just rest and recovery?

I think AJ didn’t get the memo…

Yesterday was a little crazy. First things first, they decided he needed a new arterial line. Unfortunately, AJ is what they like to call a “hard stick”, so it took a while for them to find a good spot to place it. After 2 hours the nurse popped down and let me know they were still working on it, and assured me that they weren’t sticking him at all yet, just trying to find a good place to put it. And another hour and a half after that they stopped by to let me know they had it in. He was fine the whole time, just was giving the staff a run for their money!

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Not long after that the team decided they were concerned with the fluid accumulating around his lungs and decided that they needed to put a chest tube in on his left side to drain it so they could figure out what it was. They determined that it was chyle – and I’m going to do a horrible job explaining this, but it’s basically the fatty part of the breast milk he’s been getting that travels a specific path in your body. At this point they’ve changed his feeds to a formula that should avoid going that route to give the duct a chance to repair itself. That said – roughly 10 hours later and he’s drained 170 Mls – for all you baking types that’s nearly 3/4 cup – of fluid from around his lungs, which should definitely help with his breathing to have that out if there – it also makes me incredibly thankful they opted not to extubate him already as this fluid would have made it hard for him to breathe. It does, unfortunately, mean that he’s not getting any breast milk again – but at some point going forward they may be able to switch him to skimmed breast milk. He does seem much happier with that fluid off of his lungs…

And as if that wasn’t enough excitement, he lost one of his IV lines after that so someone from the stick team had to come up to put a new one in for him, thankfully it’s not as complicated as an art line, so it didn’t take quite as long, but still.

I made it back to the Ronald McDonald house around midnight. It was a little crazy. AJ has remained his normal self and kept his numbers appropriate with a little bit of an assist from the nurses here and there, but largely he’s held his course.

Aaron arrives tonight (technically tomorrow morning), and will be here until Tuesday. Monday we should be having a conference with his care team to walk through their plans and our path going forward. There’s definitely still a long road ahead!

Thank you for all the continued prayers and happy thoughts, they are still very needed and appreciated!

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