Wednesday we had our monthly appointment with the GI doctor and nutritionist. We don’t really know for sure what happened with Aimee’s intestines, why they nearly stopped or how they have slowly improved every week since. The specialists can’t explain it either. I do know that I will have a hard time not associating it with the sedated scope. How could we ever agree to anything sedated again after such a small, short sedation seemed to cause such near calamity?! And yet part of our conversation Wednesday revolved around the central line having some bleeding/swelling again and the possibility of needing to replace it. Oh I pray that it does not come to that decision. How could we say yes and yet how could we say no?
Aimee has been dealing with a pressure sore in midst of all of this due to her lethargy. She is getting sub-optimal nutrition currently because we are keeping her calorie intake super low, about 400 calories daily on average. She is finally losing some of the extreme weight that the TPN had put on her over this last 18 months, but it is SLOW. About a pound and a half per month. Her weight increase has been a major source of discomfort for her and our main goal is comfort. So we are choosing sub-optimal nutrition, but this isn’t great for her skin health. After about 6 weeks with this pressure sore, we are finally seeing improvement from all our efforts at hourly repositioning, ect.
Hard work has been going into making a covered patio outside of Aimee’s room! We are all loving the fresh air and looking forward to many beautiful days outdoors either with Aimee or right outside her room. So much gratitude to the friend who donated the concrete, the friend who helped build the roof and pour concrete, the family who sent vertical planters and dirt to grow veggies on the patio. Everyone here is so excited!
