Bye Picu!

A lot has happened!

I can’t promise this update will make sense. It’s been a while since I’ve slept.

Since my last update the sedation ween has begun. The paralytic was turned off. Milo was extubated to room air-no oxygen support. Which is amazing!!! It has also been extremely hard. Milo was very agitated any time I tried to take a step away from him. He couldn’t even handle me sitting next to him. But he was happy as a clam when I stood with my arms in the crib with him.

Last night was brutal. We all know what a fan girl I am for nurses. I got the vibe that my nurse and I were not on the same page. At about 3am Milo and I had not slept at all. I relayed to her how handsy Milo had been. That he was trying to grab everything and anything and I was going to try and get some sleep on the couch but asked her to please keep a close eye on him while I slept so he would not grab any of his tubes or wires. She assured me everything was tucked away and she would watch him. But to my horror I woke up 30 minutes later to Milo sobbing with a leed in one hand and his epidural in his other. Nurse no where to be found. He had ripped his epidural out of his own back. Oh my god. Needless to say no sleep was had last night. They decided not to put another epidural in and added the option of morphine. So I sat on the couch and stared at him the rest of the night paranoid. Until I fell asleep sitting up and he pulled out his iv in his foot. Crafty little stinker. Classic Milo.

Jon relieved me for a few hours so I could run home to take a short nap and I was able to see Charlie for a little. It’s been a fine balance trying to keep Milo comfortable but not overly medicated. Overall he is doing amazing. Flashing smiles and showing his personality more and more. He’s been playing and babbling all day. It’s been incredible to slowly here his voice coming out again more and more.

Milo also made the big move to the 7th floor for the duration of his recovery, BYE PICU!!! And I was finally able to hold him for the first time since Wednesday.

Next step is to get his chest tube out. This will allow him to move more and safely and for more snuggles. I can’t explain how incredibly devastating it is to see your sweet big boy in pain and not be able to scoop them into your arms. It physically pains me. So I can’t wait to get that chest tube out!!!

I’m just so proud of Milo. He is doing amazing. He has lots of hard work ahead of him but he is doing incredible.

Keep up the prayers and positive vibes. We so appreciate it!! ❤️