Daily Archives: January 4, 2011

2011. So far, not so good.

Some days I sit in this hospital room and just space out. I can sit here for three, four, five hours or more and not even realize that much time has passed. You would think with all this time on my hands, I would be well versed in the going’s on of the world, I would have a back log of articles to post, all my photo’s would be organized and I would be caught up on all my correspondence from friends and family.

Yeah, right.

I have cards in my bag that I keep meaning to write and mail out. I have a book I carry around, just in case I have time to read. Really? I have plenty of time to read. But why I haven’t even begun to read it, is beyond me. I still haven’t used my iTunes gift card I received for Christmas – I know what I want – I just haven’t gotten around to downloading it.

I have Netflix at my fingertips and I haven’t watched anything in months. I have email and Facebook and Twitter and friends who I should be chatting with, yet I don’t or at least not as often as I want to. And I do want to, I just can’t seem to find the time to do it. Any of it. Hours of free time on my hands and I catch myself staring off into space, having lost all track of time.

Like right here – I stopped typing an hour ago. I’ve been lost in thought and couldn’t even begin to tell you what I was thinking about. I’ve been sitting here since 7am. It is now 3pm. That’s a full 8 hour work shift! Sure we had rounds and I’ve helped change  a diaper or 2, but unlike yesterday, it’s been a quiet day.

Yeah, yesterday was not a quiet day. Capt Snuggle’s got to travel around the hospital a bit yesterday. He received a full body CT scan (again), his weekly echo cardiogram, an EKG, they placed a new PICC in his arm and removed the infected one from his leg and we ended the day with yet another bronch.

CT scan shows worsening of issues within his lungs, new issues with his pancreas, inflamed lymph nodes in his liver, his intestines look the same, no better, no worse, and now his kidney’s are enlarged. The bronch confirms that there are issues with his lungs. Although visually, his lungs, while still inflamed, look better than before. They were quite bloody a few weeks ago.

Okay, maybe I have a few reasons to space out and lose track of time, but it’s still frustrating! And you know what I’m going to say next. Wait for it…..

On top of everything else, there’s more, there’s always something else going on.

His adenovirus is back.

With a vengeance.

The amount of adenovirus in his system now, is higher than it’s been the entire time we’ve been here. It’s frustrating and devastating – the adeno caused the GVHD to flair in the first place, if they can’t get it back under control, the GVHD could flair up again. And honestly, I don’t know if he can withstand another flair up.

He’s been acting sick for a few days now and this is probably why. He has adeno, he has VRE (that’s why they replaced the PICC) and he has the fat-lovin fungus. He’s been dumped with 9 kinds of immunosuppression’s  and I’m afraid that if he gets hit with anything else, he’s going to spiral downwards, fast.

Sometimes I think I might be too greedy. I mean, his skin looks amazing and for that I am immensely thankful. I know his skin healing is a BIG deal, especially when you think about the fact they didn’t even expect him to survive. But in my task oriented mind – it’s done. He’s accomplished it, now on to the next big thing. I want the next issue to be resolved and I want it now. Then on to the next and the next and.. okay well, maybe I am being too greedy.

His “To Do”  list is quite a bit longer than most. And I suppose I should lead by example and get my own “To Do” in order and stop day dreaming all day.

BTW, it’s now after 6pm. Yeah, I think I need to re-evaluate my time management skills. Too much time, not enough management.

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Categories: Life | Tags: , , , , , , , , , , , , | 9 Comments

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