Lucy's labs came back this morning looking worse than yesterday. All of her electrolytes are off, in particular her renal function labs, alerting us that she is renal failure. She is hypercalcimic again. Unlike the last time her levels were critically high, we are unable to flush the calcium out of her body this time because her renal function is so poor. We are afraid of upsetting the delicate balance of things going on inside of our little girl's body. She is in need of a blood transfusion, but we are holding off on doing this because her electrolytes are so unstable. Adding any extra fluid, even in the form of packed red cells, could upset things even further. We are looking into a new med for Lucy that could potentially help with the calcium issue. It is a med typically given to dialysis patients, and as such is not something that is commonly used to treat hypercalcemia in a patient like Lucy. As for now we have removed what little calcium we added back into her TPN.
Pain is increasing, we are once again weighing Lucy's need for pain control with her need to breath. We met with our palliative team today, surprisingly they had no recommendations for us at this time. Everyone is worried about our girl and as such are afraid to "rock the boat". About the only thing Lucy has going for her at the moment is that she is breathing. To quote the good doc yet again, "breathing is good, not breathing is bad".
We had some very difficult conversations with our surgeon tonight which has left us needing to process a lot of things before I can adequately express them in writing. I will say this, we are so blessed to have a team of docs who care so much about our girl and her quality of life that they are willing to discuss the really tough stuff of life with us.
Tomorrow is our firstborn's 12th birthday, where has the time gone!?! I am looking forward to seeing him and the girls tomorrow night.
Please, please pray for Lucy, times are tough...