Wednesday, June 15, 2011

Home, but new phase

It's good to be home. Good to be able to get about eight hours of sleep last night, only interrupted by the midnight alarm for medication. Nice to not hear constant alarms and hospital noises. I realized last night that in the last two months I spent twenty nights in a hospital. I've probably slept less in the last two months than in any period of our lives, including when the boys were newborns. I'm amazed my back has held up so well. Of course my fitness and conditioning for biking is completely shot, and I haven't ridden outside once this year. But maybe for the next month and a half I can get outside, especially if summer arrives, before Meagan goes in for her two week stay for IL-2 treatment.

While we are home, it is still difficult for Meagan and in some ways more difficult for me. The medications she is on for her anti-seizure and anti-inflammatory are not kind to her brain. They make her loopy, fuzzy, forgetful, and not able to think clearly. She is aware of that, and it really upsets her. She wants to be more self-sufficient, but can't, and is upset that she has to rely on me and the inconvenience it means. So she is much more emotional (she cries more). It will likely pass as she gets used to the medications and the medications are gradually reduced.

Being out of the hospital is good, but it puts all the responsibility on me for making sure she gets her medications at the right time and right dose. She is simply not able to self-manage yet. She's on a lot of different medications right now, so there is a lot of organization (my iPhone calendar with reminder alerts is useful that way). Plus we still have some wound management to take care of from her skin tumor removal last week; the dressing needs to be changed twice a day. Having the nurses do all this was pretty nice.

The good news for today is that I acquiesced to the extremely kind offer of a dear friend to get a massage from a person who is apparently fabulous. That is my big adventure for the day. One that sounds pretty good at the moment.

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