Eye Bumps and Life Lumps

I had thought that Joel's eyes were, at least, getting better. That the antibiotics were really helping. But a day or two ago, another huge lump started under his right eye. It's grown to epic proportions, just like the first one on his upper left lid did. The size of a large pea. It's rapid growth and the pressure it has caused keeps breaking blood vessels in the eye lid, so that Joel's eye keeps leaking blood. The blood then dries and sticks his eye shut. But that doesn't matter too much, because the lump is so big and the eye lid so puffy that Joel doesn't open that eye anyway.

I'm sorry if this sounds like a horror story, but then, in a way it is just that. It's not really bothering Joel, other than I think it's annoying for him to feel it there and not be able to open his eye. But it doesn't distress him. It distresses me. I'm the one who is horrified.

And I cope with it, this thing I have absolutely no control over, by putting it aside as a thing that doesn't really matter. I cry about it at times. But mostly it's something I can do nothing about, and if I think about it, I remind myself that Joel is comfortable and that eye bumps, in light of everything else, are MINOR. That's how I cope with it. I do my best to refuse to make a big deal of it.

I greatly wish I could tell you something, anything about Joel's condition, but I don't really know how he is doing. He is such a mystery. The P/C doctor was talking with me on Friday. He said how often it's really hard to tell when a child is close to dying. Afterward, of course, it all becomes clear. But afterwards, it's just really hindsight. If Joel had gotten better, we'd say, "oh, he was just sick," or "oh, he took a downturn." But if he died then we'd say "Oh, I see now that it all was a sign he was dying." Yeah. That pretty much sums the problem up.

Children are so different from adults. Particularly when they have a degenerative disorder. I feel like it's sort of my job to figure out and know sort of when Joel's really close to death. So I can let friends and relatives know. Have my family come over specially. That sort of thing. But on the other hand, I feel like the boy who cried wolf when I hint that it would be good for people to "come see him," but then he gets a lot better. It's a lot of pressure for me, I guess. Feeling like I should somehow know. And protect everyone else from "false alarms."

This is where I have to live though. I face the same problem every time "something" goes on with Joel. Life has tried to "cry wolf" for me with Joel quite a few times. And I've manage to stare down a few doctors when I didn't buy it. Like last year, when Joel had the problems breathing. I really didn't feel Joel was on his way out then, though for sure it was scary. Of course, that is the thing. I can never be sure. I can never be sure until IT IS HAPPENING.

So, I'm not trying to cry wolf here, and I'm not trying to say that Joel is about to die, and I'm not trying to say that everything is situation normal either. I'll just tell you what I know, and then you will have to figure it out for yourself, same as I do. That's as good as I can do for you. Sorry. But it's also as good as I can do for me, and if I have to deal with it, surely you can do too.

Joel may have a viral infection. His blood work was never quite clear on that when we brought him in to the hospital. If this is a viral infection it may be a bit different from other's he has had. Or maybe not. Because this time we have home oxygen and a CPAP. And that might be making a difference in how this appears.

He's not had much fever. He's had his usually fevers, that he has had for at least a year or more now. He's not coughed very much, though he has coughed up some pretty yucky guck at one point. But then, when he is ill, he doesn't always have a fever and he doesn't always cough. See why this is so tricky?

He started out with a week of pretty bad unhappiness/irritability/pain. Now he is very comfortable. But he sleeps most of the day. A friend asked me how many hours a day he sleeps. I had to laugh. Easier to count the time he is awake. But not in hours. In minutes. Yeah, that is what I mean when I say he is sleeping A LOT. Though I have reduced his morphine, and he is more responsive. If I touch him or move him, he responds. But he just goes right back to sleep.

During the irritability, his O2 was fine. But since about Wednesday, he has first had some stridor, then lots of upper airway "rattles" then some stridor and now he sounds fine. But he still needs an O2 boost right now. This has happened to him before, back in the fall, and then it went away. But that was much briefer periods and more off and on.

He is moving very little. Is it because he is sleeping? I don't know. He does move his head or his arms a bit when I stimulate him. Besides opening his eye, I mean.

I don't know what this means in the specific. And it would almost be meaningless to say it means he is dying. Because he's been dying for a long, long time now. It tells you nothing about the specifics. What I do know is that Joel has been going downhill for quite a long time. And whatever happens in the next week or two, of course, this was not a good sign. But I don't know, and not even the P/C doctor would venture a guess about it, whether that means Joel's going to live another 6 or even 8 months, or if it means Joel's going to live another week or two.

This is one reason it has been so hard for me to write here and tell you about my heart. How can I explain any of my feelings with out telling about all this? And if I tell you about all this, how can I help it if you leap to the conclusion that Joel will die any moment, or if you think I am just "panicking" and over reacting? (I'm not doing that, by the way. Just saying) Well, I can't help it. I realize that. So I'm writing this to you to give you the same info and choices about what you think/feel about it that I have. Of course, I'm his mother, so it is a bit different. But you know what I mean.

Now, maybe, one of these days I'll write about my thoughts and feelings about it all. Not just about the eye bumps. (which, by the way, are the most OMINOUS thing that has happened for me. Yes, the eye bumps seem more ominous to me than the sleeping and the O2 and all that. Because the eye bumps have never happened before, you see.)

I hope when I do write my feelings, you'll remember what I wrote here and that when I write my blog, I'm sharing thoughts and feelings. That means they are not verifiable TRUTH. They are subject, not objective and they change from day to day or hour to hour. I'm just saying.

For now, thanks for your prayers and concerns. They are appreciated, very much. Tonight, the church is popping over to sing to Joel once again. I hope he will enjoy it, even though he is drowsy. It's one of the few things we can do for him right now. And so, we will sing.