Thursday, May 21, 2009

CHOC day 18

I'm relieved to report that we get to go home! I know I said I didn't care either way, but living in a hospital sucks! Don't get me wrong, this place is great, they love Maryam, they waved the "no running rule" for her, the food isn't bad and her room is comfortable, but I'd love to sleep in my own bed. I'd love to spend some more time outside. And I'd LOVE to take a shower in a non-kid sized bathtub/shower. Besides, with the holiday weekend Maryam wouldn't have any therapy for 3 days straight, what's the point? We're coming back on Tuesday for 2 therapy sessions a day for 3 days. Which would only be 1 less appointment a day than inpatient. I'm perfectly pleased. And, this way, we can go home and fight the good fight at home and come back and tell them how it went and seek advice. I'm sure we're going to run into a few speed bumps at home, it will be great to have experts to lean on to help us get over them.
So, we found out today that Maryam hit her calorie goal for Tuesday too! HOORAY! And I'm pretty sure she ate better yesterday than she did on Tuesday, so I'm confident that she hit her calorie goal for Wednesday too. We did have a hang up with the feeding pump. I guess the kitchen measured the formula wrong and consequently Maryam got 75 less calories for 2 days straight than she was supposed to. I'm glad I caught it when I did, or who knows what would have happened. When every calorie counts, you want to make sure she gets every calorie!!!!
Tomorrow we have our meeting to find out if Maryam hit her goals. I really hope that she did. My most ambitious goal for her coming into the clinic was for her to be able to go home having only one bolus a day and that be at night when she's asleep. I've been working very hard to explain to her that "big girls don't use a tube to eat, they use their mouth, like you've been doing." And "the tube is only for medicine now, remember?" And that sort of thing. She has only asked for her tube 2 or3 times since we've been here, I'd love to keep it that way.
I'll try to blog tomorrow after the meeting! Wish us luck!!!
As for pictures, I'm going to have to post them once we get home. I don't have a strong enough connection to get these posts to upload without photos, trying with photos would be a complete waste of time.

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