I loved watching her make the clowns laugh today. They come to entertain her and brighten her day and she in-turn brightens theirs. There she goes letting her light shine again. This girl has packed more living into her four years than I have into my 37. How does she do that? She makes everyone smile, this one.
The past week has been a roller coaster. We have been through the wringer emotionally as we watched her heart rate dip while she endlessly slept and anticipated her departure. And then as we witnessed that heart rate come up and settle out we saw her filled with life again and hope was renewed that we might get to take her home. She is still in the hospital, but making improvement. The goal is to wean her from her IV hydration and Potassium and get her back to taking her fluids through her ng tube again. The problem is, that she has diarrhea that won’t abate and kidneys that are damaged and dump large amounts of Potassium from her body.
So, we’re working on those things these next few days and hoping for one more chance to have our girl at home with us. She is weak and hasn’t left the bed but to use the restroom, but her spirit is strong and her funny bone is in full effect. The rest of us are doing well, if not a little tired. Family has stayed nearby and we have encamped around her. Children’s Medical Center Dallas is Phoebe’s 2nd home and there are plenty of people who love her there to pop in and make her day. It’s a joy to see how she has touched the hearts of so many involved in her care. Her nurses and doctors are top notch and we couldn’t ask for a better team of people to care for her.
We are hopeful and prayerful for a safe return home for Phoebelicious and to come back under her hospice team in East Texas who have been equally wonderful to us. Thank you for your prayers and support.
With gratitude, Amey
Phoebe plays peek-a-boo: