It’s been a few days, and we’re finding out what our “new normal” is. Titanium Girl’s days (and nights) revolve around medications and trying to achieve a comfortable position and temperature (the meds make her alternatively hot and cold in quick succession) for longer than a few minutes. The places where her excised ribs formerly were located hurt, understandably. Her back hurts, understandably. The right shoulder blade, which, before surgery, was pushed out by a section of her spine, aches, understandably. Sometimes the meds help and she gets a span of sleep, though it’s always interrupted by medications. She needs them around the clock, and due to the timings of the various pills, there are sections of the clock where she gets something every hour for a few hours before a couple hours’ break. We have a spreadsheet DH and I sign off on to keep track of which med is due when. I hate to wake her for meds if she’s sleeping well, but if we don’t stay on top of them, she gets behind the pain curve, and it’s harder to get out of pain. Even when staying on top of the med schedule, sometimes the meds don’t help so much, and she has to use other coping skills like focusing on her stars from her Galaxy Lamp. She’s getting tired of pills, understandably; to say she’s tired of the pain is an understatement.
But it’s not been entirely negative. While she’s still dealing with pain, it’s usually at a 5-6 on the pain scale with occasional peaks at 7 or 8. Her pain before the surgeries was often 5 or 6, and in the hospital it peaked at 10.5. She’s walking a bit straighter with more level shoulders as the muscles get stronger and more used to being where they are now. Her hips still seem more off, but I’m telling myself to be at peace and to be patient as those muscles probably need more time and strength to hold her hips straight. Her body’s doing so much to heal and strengthen right now, and it’s really a herculean effort it’s putting forth. Any one of her incisions would literally be a mortal wound a hundred years ago, and she survived three of them; that’s kind of crazy to think about in terms of how far we’ve come with today’s medical science.
The last of the gauze dressings came off of the drain sites yesterday, so she’s down to just steri-strips on the two side incisions and the spine incision. She was able to take her first real shower (as opposed to sponge baths previously), and while she needed some help with that, she got through it fine (this is actually quite a feat; some kids pass out or nearly pass out with their first shower due to the length of time standing and the heat of the water). She’s fully mastered the unassisted log roll, and she can get herself into a lying position, though getting up from it is more difficult. She’s acquired some really high level mental coping skills that would be difficult for a lot of adults to obtain.
She hasn’t had visitors yet–either friends or family–because she just hasn’t felt up to them; I hope she’s ready for them soon, because I saw how much they lifted her spirits in the hospital, even when she wasn’t feeling her best. I’m also not entirely sure how she’ll do at Thanksgiving. It’s at my sister’s house, and she’ll likely have to go through all the same machinations of trying to find comfortable positions as she does here, and in a crowd of people, that’s likely to be harder. We’ll probably go late and leave early; she wants to go–we all do–but her endurance probably isn’t up to the task for very long. But who knows? Our Titanium Girl could just as easily exceed our wildest expectations of her stamina. She’s already done that and more given everything she’s endured to this point.
