Its been a tough week. Ash spent most of her week with eyes swollen shut, leaking bili from her them, from her nose, and into her urine. She stayed febrile most of the week. There were days she slept for 20+ hours. Its not been pretty.
Last night she started to perk up and by bed time was giggling. She wanted to "go now". As I tucked her into bed I promised if she felt good we would go tomorrow. This morning when she heard me moving around in her bedroom she opened one eye and signed "car". Yes, sweet girl I promised. Today has been her best day all week. Although she is far from feeling like herself she was better today.
The infection behind her right ear is not gone. We have an early morning appointment with her ENT to decide how to proceed. There is a swollen area of infection protruding from the bone about the size of quarter. It eerily resembles the knot we saw come up two years ago this month. I will not be at all surprised if they send us for another CT to determine if surgery should be performed sometime tomorrow. I was very, very hopeful that treating the infection would clear it up, but I haven't seen many changes in her appearance or at the sight of the infection.
Ash's liver and kidneys have taken a huge hit this past week as she battled the infection in and behind her ear. We have gone back to bilirubin levels in the mid teens and her eyes and skin tell that story. She is beginning to smell toxic once again and she is clawing at her skin too. The old transplant wound is opened up once again because of the clawing and I am back to cleaning and packing the incision.
I just wanted to give a quick update. We are grateful to see her smile return even if it is less common throughout the day. I'll take a few grins and the occasional giggle over the miserable crying and whimpering she experience for much of last week. Thank you so much for your concern, kind words, and prayers. We should have more answers in the morning.