Monday, April 20, 2009
Our new routine, a challenge to say the least
Jen has been going so so good this past week. We are settling into our new routine too. Our day starts about 30 minutes earlier than usual and ends a lot later than we are use to. It is a challenge. We have 1/2 her meds going through the tube, and the rest she swallows. She gets 2 feeds during the day which each take an hour, and one at night before bed. The one before bed takes 2 hours to run. She is tired and not wanting to be in her chair that late at night. This means she is in her room in bed. Sounds easy enough, but she has to be propped up at least 30 degrees and stay there. Anyone that knows Jen well, knows when she is in bed, she moves constantly on her back in a circle clockwise. I tried the other night to do it after she fell asleep, as she doesn't move around as much, but she won't sleep propped up on pillows, she needs to be lying flat, no pillow rolled on her side scrunched in a ball. SO - that didn't work. While it is running, one of us is in there with her, keeping her propped up surrounded by her pillows. She is funny, all of a sudden with quick force, she swings her legs and pivots around off the pillow. The tube gets caught up in her moving body, the bells ring because the feed shut off and the IV pole tips around, and she is happy as can be. This is all when I was right with her! It is a challenge to say the least for 2 hours! She is still getting use to it all and so are we, she needs the nutrition, but it is time consuming. I look at it like this, I thank goodness she has the strength and the ability to swing those legs, move her body and make herself comfortable, after all she is in bed, she should be comfy, BUT there is never enough time in the day to get everything done, and now, well like I said we are settling in.
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