Friday, June 15, 2012


Today was awful. For those of you reading just to keep updated with Rambo, I'll spare you from having to read this entire post. He is fine. No setbacks. On the whole, things are looking good. 

But today. Oh, today. Rambo, or as I'll refer to him in this post as Nightmare, was exactly that. My morning started by walking into the room of a purple nightmare. He had somehow disconnected the vent, and although it only remained that way for maybe 30 seconds he was already a dark purple mess. And the day only got better from there. He was HIGHLY agitated all day. I mean, ALL day. I got there at 9:30 this morning and couldn't leave his side until 8pm. Even then he wasn't content. 

I tried everything. Even a dose of Valium didn't help. He was breathing fast and tugging a little hard due to the fact they are weaning his vent. Things are going pretty well there, but they just got a little ahead of themselves. It's taking more work for him to breathe and he isn't comfortable with it. Yet. He'll get there. He always does. It just takes him time. And they even admitted to the fact that they have weaned his vent a lot in the past 24 hours. And his left lung is still full of pnemonia. Yet, it took me until almost 5pm to get them to go up just a teensy bit on the vent. Ugh! And again I say, UGH! Once they did, his numbers started looking better and he was more able to be appeased. Still not happy- still driving me crazy, but better. 

Poor guy. I know he is tired of laying there so that's why we did everything BUT lay there today. He was all around. In the bed, out of the bed, standing up, being carried. We had toys and tv and cords. Everything a boy could want. 

This did cause for distraction at least for a little bit. He liked to look at the front of the tv then turn it around and look at the back. Look at the front. Look at the back. Look at the front. Look at the back. Look at the.... yeah, you get it. All the while, wacking his vent each time he turned it almost knocking off the vent or out the trach. Then he would try to bite the tv. Literally hours of this today. 

You know what he wanted to do? Grind his teeth. GRIND HIS TEETH!!! I can't stand it. It gives me the shivers just thinking about. If I had to pick one thing that makes me cold to the core it's grinding teeth. WHY?!?!? Why does this have to be his new favorite thing? I love the boy, I really do. But after trying to keep him happy, keep his trach in, and hear him grind his teeth I had to wonder. 

Thankfully, his nurse tonight is very familiar with him and is also good with him. I felt fairly comfortable leaving him tonight. Not to mention the fact that I was ready to run in any direction away from him at that point. 

Usually during the day I have time to browse the internet or write a post or read. Not once today. Everytime I sat down he was instantly like a writhing alien. Aside from one 10 minute nap.

I know it's not his fault. I know most of it was that he just wasn't ready to do all that breathing on his own yet. But good grief. So help me if those doctors wean it even more tonight. I told the nurse and the RT that I highly prefer them not to. And if they decide to do it (because that's what they do) then I need to be called with an explanation as to why they think that's the best idea.

They're crazy if they think I won't get up at 2:30 in the morning and go over there and set them straight. 

All in all, today sucked. I've certainly seen better days. Mostly, I hope that little man gets the rest he needs tonight and maybe, just maybe, we'll have a better day tomorrow. 

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