Updates

Things around here have been going great! Lucy continues to amaze everyone while on TPN. We couldn't be happier with the changes we've seen in her! Knowing this has to come to an end makes me sad.

Earlier this week our home nurse noticed that Lu' s heart rate was up and staying up. Later on, the GI' s office called and wanted us to come in for an infusion of iron  because her labs showed she was real anemic. So, we ended up spending the entire afternoon at the hospital in order to get our infusion and meet with Dr. G.

Dr. G was super pleased with how Lucy looked!! We discussed all the good things going on. I stressed that we need to raise the bar for our goals for Lucy. She's been short changed for too long. Lucy has not received the estimated necessary amounts of calories and fluids since she was two and a half. That's nearly four years!!! I honestly never imagined she could feel this good.

Dr. G agreed. But we had to discuss weaning back onto j- tube feeds. I' m nervous. We started last night at just 5 cc' s an hour. She was quite a sight in bed last night with two bags, cords, and pumps running simultaneously!!

She woke up this morning complaining and slow, but that can be just a normal part of the re- start process.

Wish us luck!