Ayden update

This is copied directly from a note I posted on facebook if you're wondering why it sounds familiar. No sense in retyping it!

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Well, I'm finally home from the hospital. I left work at 1 today to go up there immediately. At the time I had absolutely no idea what was going on, other that Ayden had bacterial meningitis. As soon as dad said "they don't know if treatment will work" I sort of had a mini-breakdown right there in front of half of my co-workers. But oh well. Hopefully you guys understand now.

I'm thankful that I was able to leave and not freak out for the rest of my shift. I'm also thankful I had already asked for the day off so I'll get to spend more time with him at the hospital tomorrow.

At any rate, information!

The meningitis was caused by the E.coli infection. It got into his urinary track and then into his kidneys. From there it got into the blood stream, into his spinal fluid and now it's in the lining of his brain (obviously). The doctors seem to be divided on his prognosis. Some seem to think he will not recover, but the infectious disease doctor seems to be much more optimistic. Which gives us all hope. There is a plan of attack now, so that's something.

So, at the moment he basically has no immune system. And we aren't sure if that's because of an underlying problem from birth, or from the infection it's self. We won't know until the infection is under control. At the moment he is getting platelettes every 4 hours (I guess that's what a blood transfusion is? I'm not great with all the medical terms) because his body isn't making new ones on it's own. He is also on a series of antibiotics and is actually able to eat. And of course by "eat" I mean taking nutrients through a feeding tube. He was only taking a half ounce at a time, but while I was there he took an ounce with out it coming back up...so yay!

Every little good thing I hear is something to be hopeful for.

He is breathing on his own which is also good! They do NOT want to put him on a respirator unless it's absolutely necessary. For babies, it can be a very bad thing. It's difficult for them to be weened from it, so they don't want to get him on it at all. He has times when his breathing gets very shallow when he's sleeping, it's like he forgets he has to breathe. But a little nudge and he starts up again. Sometimes he'll start breathing too fast, but he'll regulate it. It was up and down while I was there. But, he's using his little lungs with out a machine so that's something.

Unfortunately, this will cause brain damage. There's no two ways around that, it's just not clear how much. We know at this point though that he had brain damage from birth. He actually should have never been sent home to begin with. He was very stiff and didn't want to move his arms or legs, but we thought it was because he was premature. But they seem to think it's more than that. Obviously, no one is happy about that.

From what I'm told the part of the brain that controls organ function is working. As in, his heart is beating, his lungs are working, etc. It's learning and speaking and stuff that'll be a problem. Or at least that's what it appears to be now. Don't quote me on that though, as I didn't get a ton of information about all of that.

We know now that it's going to get worse before it gets better, which is usually the case. But, we are hopeful. We were told that most babies with bacterial meningitis only last a day. He's been there since Saturday. They also said that they don't typically see this type of "fight" from baby boys..it's usually the girls. So I take it that he's using his Dearmond stubborness to his advantage! The infectious disease doctor actually took pictures and did a whole presentation about Ayden to a bunch of other doctors because of this. So, again, that's something!!

The antibiotics he started today they say can cause kidney damage, but the risk is worth the reward. Better to lessen brain damage. The meningitis can also damage hearing, but so far we don't think that's happened. He is responding quite a bit. Opening his little eyes and looking around, smiling even. When people talk even if he doesn't have his eyes open, we can see him moving his eyes to whatever side someone is talking on. He smiles a lot when mommy or daddy talk to him or touch him. He really enjoyes getting his gums brushed because the toothpast stuff tastes good, and he also likes getting rubbed with lotion! (who doesn't?)

I'm worried, but optimistic. The outcome is yet to be seen of course, and I understand that things can always happen. But I'm not going to give in. No one is going to give up hope. I don't know, when I put it all down like this, I feel like he really is fighting. It could all change tomorrow, but today I am hopeful.

and again, we are all SO appreciative of the well wishes. It makes me feel good to know people are thinking about little Ayden when they don't even know him.