Yesterday was a week since her surgery. She was pretty comfortable most of the day, until bedtime. I think she was just exhausted. Moving her up and down stairs is scary for her, because she's afraid it's going to hurt. I can't even imagine what she's feeling. I know how my hip felt when I injured it, and it it was just one side that wasn't broken in two places!
She asked me yesterday when she was going to be having her surgery. I explained she had it last Friday. She asked what they did. I gave her my standard answer "They made it possible for you to get your medicine without drinking it, and made it easier for you to move your legs." She asked me "Exactly how did they do that?" So, I told her everything. She reached down and found the pump in her abdomen, started giggling and said "That feels funny!" Yes, I'm sure touching your belly and finding what feels like a hockey puck would be a little...odd to say the least. Then we talked about her legs, and her muscles, and she said "Well, I don't remember any of that, but I like that I can stretch my legs now." Telling her before the procedure would have been a disaster. But I'm glad she knows everything now. (And the biggest hurdle now is teaching her NOT to lift up her shirt to total strangers, ie., the nice man from CHOP who delivered a special wheelchair, and saying "Hey! Look at my pump!")
I've started jotting down all the considerations that will have to be taken to accomodate traveling with her now. Medtronics, the manufacturer of the pump has a list of every pump-certified hospital in the country. When we visit Nana, there are two in Lexington - University of Kentucky and Shriner's Hospital. If the pump should alarm, we need to take her someplace that can treat the issue. We have a lovely 24" printout of information including the pump manufacturer, serial number, dosage/output, catheter serial number, etc. We're looking at a few options as far as getting information to first responders in case of emergency. Laminated cards attached to her wheelchair with all the info on it, and even a Road ID (roadid.com). This is a small bracelet she wears with a website and id number that a first responder can log onto, punch in her number, and have her info easily accessible. Today's plan is to pick the brain of a few ER people and paramedics to see what they suggest.
The most amazing thing is watching her discover her new body. I came in to find her yesterday, with both hands above her face while laying down. She was just moving her hands around, wiggling her fingers, and gazing in amazement.
"Grace, whatcha doing?"
"Watching my hands move."
"I see that. Why?"
"Because I didn't know they could do this."
Her right hand has always been extremely limited in function, and neither of her hands could cross midline. She's scratching her nose, pushing her hair out of her eyes, pulling up her blanket, and holding the TV remote - all with her right hand.
Her legs have never been straight. Her knees, because of the tighness in her adductors, have always been pinched together when out of her chair. Now, she sits on the couch with her legs straight out in front of her, feet resting on the ottoman, as if it were the most natural thing in the world. We actually have to prop her knees to keep them from leaning OUT!
A little about DuPont, and the Ronald McDonald House. What an amazing place. I was blown away at the care taken to not only meet the needs of the patient, but the needs of the family as well. If you are inclined to research charities in which to make donations, please consider the Ronald McDonald House. Not only was there a separate facility for families to stay, but they provided a resource center in the hospital with private rooms for parents to catch a few hours uninterrupted sleep, showers, laundry facilities, kitchen facilities, etc., all available 24 hours a day. If your school needs a service project, consider donating towels (non hospital grade!!), books, games or snack items. St. Joseph's School in Aston, PA donate 100 "Meals-on-the-Go" bags. The second grade class decorated large, white lunch bags with a Valentine's Day theme, and filled it with Easy Mac, a bottle of water, applesauce, and pudding. The kids loved it, and so did the families.
And hug a nurse, therapist, and/or doctor. I've seen PT's cry at good progress, nurses rock babies all night because no one else was there to do so, and doctors come out of their white coats, and slip on the friendship sweater of Mr. Rogers. The responsibility they carry is huge, and sometimes the appreciation needs to be shown.
Let's see what today brings :)
xoxo
K & G
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