Today we saw more of the Lucy we know and love. She is talking and playing more than we have seen in over a week. We believe that because we are able to feed her through a central line she is starting to feel a little better. As has always been the case with Lucy, if we can get her the proper amount of nutrition she will show you amazing things. We are going to increase Lucy’s lipids or fats in her PPN tonight, we are limited to the amount of lipids and dextrose we can feed Lucy due to the type of central line. We are increasing her feed rate to 10mls, at 1/2 strength Elecare tonight and I can already tell it’s not going to last very long, she is laying down and her tummy is sucking in and out, not a good sign.
We started Lucy on two more meds tonight because her stomach cultures grew gram negative rods and yeast, most likely due to bacterial overgrowth from her slow motility. I am so glad that I am not the one having to keep track of all of the meds for Lucy right now. I think we are up to ten meds dosed two or three times daily.
I did leave the hospital this afternoon to pick up the girls at music and to get a breath of fresh air. It was a beautiful day, warm, and the colors on the trees are peak. I walked outside to drive to music and had no memory of where I parked the van, I had to call Drew and ask him. You think I have been here too long?
Tomorrow there are a lot of festivities for the kids surrounding Halloween. My mom, dad, and Sophie are going to come and partake in the festivities with us.
I am tired and I need to talk to Lucy’s nurse about slowing down her feeding rate.
As always thanks for your thoughts and prayers, they are being heard.