Frustrated...

Hey all, I haven't been posting all that often in here, finding it hard to bring myself to do it.

I figured I'd give you a snapshot as to what goes on in my mind on a daily basis. When I wake up in the morning, I'm wondering how Ethan and Tammy's night was. I'm hoping that they both got some sleep and that the nurses, as great as they are, tried to consider that he needs sleep just as much as they need his vitals.

I wonder what the plan is from day to day, then, when I find out. I question them. The other day, as an example. Ethan had a fever, it was quite high. Despite that, they change his "food" from Infalyte to formula, and increase the dose per hour by double. To me that doesn't make much of any sense, shouldn't we wait until his fever breaks before you "shock" his body more? I don't know, it just seems wrong to me.

He ends up barfing it all up, setting us back again to square 1, no feeding.

I'm going to use the word frustration, as I believe it is the most appropriate. I don't have the tools to fix this, and the people who should don't seem the be able to just yet, and from this persons uneducated view, seem to be making poor decisions about it. So, yeah, I'm (we're) frustrated.

I was asked what I wanted to do after Ethan gagged three times, then puked on me.... I wanted to answer "I DON'T EFFING KNOW..." because I don't, but instead I made the tough choice to make them stop and start over again. Frustrated....

He's spooks when there is a loud sudden noise, likely a side effect of the morphine, but even after everyone is told that, they still make loud sudden noises... I know they can't stop some of them, it's part of the job unfortunately, so again, frustrated.

Now the most frustrating part, I can't be there all the time, I want to be, he's always on my mind, but I have to work. So, when I go in, and the nurse asks me "what would you like us to do for him..." I honestly don't know because I don't know what has been tried.

I am thankful for a few things, first and foremost, that he's seemingly happy. He smiles at me when he sees me, it makes me cry to see him, he's sooo strong. Second, Tammy. I don't know what I'd do without her. She is the worlds strongest mom (no offense to other moms), she pays attention to what is going on with him, with what the nurses and doctors are doing. She educates herself on everything, so that when thy ask her or talk to her about it, she knows what they are talking about. Finally, our support group. You are all amazing, keep posting in here, your collective voices give us strength, and we'll take all the strength you give us.

Anyway, that's all for right now. Tammy will post something later for you all about how she "Won" today. (Good on ya babe!)