Wednesday, January 16, 2008

I think I'll go for a walk...

Ellie continues to do very well in her recovery and was was sitting up in her bed this afternoon when I finally got into Children's after chasing a stubborn dog around the backyard.

She Sits! Since her surgery she hasn't wanted to sit or stand and preferred to lie on her back or on her side even to read books or play with toys. Our guess is that since the new suture line is vertical (from hr rib cage to her belly button it goes across the muscle that helps her sit up. With this healing sitting must be hard. Doing this without pain meds (not even Tylenol since she never shows signs of pain) makes it even harder. Today she was healed enough to sit up and was giggling as she read book when I walked in. A good sign.

She Walks! This afternoon she surprised us all by wanting to stand up and walk as we made our way around the hospital. At first she walked like a drunken sailor but after a little bit she got the ahng of it and walked a good 50 feet alone after shaking off my hand. Another good sign.

She Eats! But the best news of the day is that we finally got the go ahead to try out her newly plumbed gut. This morning they tried pedialyte and Ellie refused (saltwater after five days would suck for me, too). After that she was offered 20 calorie/ounce Elecare and she sipped it. With so much TPN going into her we weren't surprised that she wasn't hungry and we ended up giving it to her through her G-tube as a 'bolus' pumped in by gravity all at once. She has handled these feeds very well and will go on the pump tonight for continuous feeds at a slow rate.

She is on Reduced TPN- We finally got the go ahead to start reducing her TPN time today and this evening's infusion was 20 hours with a four-hour break in the afternoon. This will likely be pared down fairly rapidly as the days go on and we hope that we can get her back to just overnight TPN fairly soon. This will definitely help her build an appetite for Elecare and other foods.

We don't have any firm plans for discharge right now but as we walked this afternoon we met Ellie's surgeon and he asked us what we were still doing there? Even though it was half kidding it was a good sign that he is happy with her progress and we hope to be going home sometime later this week. Abby is at Children's tonight (Ellie wouldn't have it any other way) and will start the ball rolling toward discharge with the morning meeting with the rounding doctors. All of the infrastructure is in place at home so bringing her home shouldn't be nearly as hard as it has been in the past.

Home sucks without my girls. Wait. No, in the big scheme of things it doesn't quite suck but having them home is much better.

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