The Latest on Antonio

On my walk over to the hospital this morning I felt like I was being reminded to be thankful. God is good at that.  Last week Tony (I gave up on spelling it Toni until discharge, since he's been in the PICU he's been Tony) got his monthly echo of his heart to check for pulmonary hypertension. Usually it's one of the echo techs that performs the test, but this time it was a doctor. I'm assuming he's a cardiology resident and he was sent to do the test for practice and learning purposes, I'm not sure. While he was performing the test more than one person said "hi Tony!" from the door or stopped to chat. He noticed his popularity and said, "Wow, Tony is beloved." For some reason those words stood out and were so sweet to hear. Everyone wants their child to love and be loved more than anything. From what I've read that is the number one quality that parents bring up to the care team when making decisions on whether or not to move forward with...

  This week wasn't as eventful thankfully, and Antonio spent some more time awake so that was nice! It's also a little scary because he seems to panic a lot, I'm sure it's hard to take everything in the less sedated he gets.  Fredy and I got our house checked out by the medical equipment company and everything was good to go there. We are checked off on just about everything on our skills checklists too, so we're just waiting for Antonio to get on the home vent so that we can schedule our vent class and do our solo shifts taking care of him. We each have to do two 8 hour and two 24 hour shifts where we do everything including emergency trach changes.  The chronic vent pulmonologist sat down and talked with me about the CT of his lungs they ordered. She said she wasn't surprised by any of it, but it does look awful. I stumbled upon one of the attendings who hadn't seen any of the xrays talking in the hall, he was shocked. He said Antonio looks nothing like hi...

 Antonio has made some tangible progress which has been nice. He's been off of his sedation drips completely since Tuesday, which allowed them to remove the PICC line from his arm on Wednesday. That's the first time since the beginning of October that he hasn't had the line, it's much easier to move him without it and he also doesn't have to be woken up by them checking his dressing, and no more dressing changes every week either. There was also a pretty big risk for infection having it in as well. AND I can finally put him in clothes without having to cut the arm off and put snaps on everything. That alone takes away a lot of stress. He's been taking his pacifier a lot more and seems to be getting used to it which is great. And when he has awake periods he has been very curious about touching his hands to his face, mouth, and putting his hands together! I'll attach some video evidence of those big wins(: His withdrawal symptoms continued to be pretty awful ...

 It's been 2 weeks since we arrived in PICU. To say that it's been an adjustment is an understatement. The providers here have talked about how they wish there was a better way to prepare the NICU babies' families for the transition, but there just isn't a way to describe the difficulty. We were told that the vent would be a transition, but everything is different here. The way they manage his medications, the vent, his labs, his schedule, his vitals...everything. A lot of it makes sense once I ask questions, but it's so hard to completely reframe my mind to fit this new plan of care. Antonio has adjusted to the vent mostly, but his blood gasses look much different than before we got here. There isn't much of an explanation as to why. They are worse, but the providers are fine with the numbers. Those numbers would have brought panic in the NICU. Most of the trouble lately has been weaning his sedation drips. He was on morphine, versed, and precedex IV drips. He...