Day +6

WBC- 0.2
Hgl- 9.5
Hct- 27.5
Plt- 14
ANC- 0.0

Claire received platelets again today. We were told that it's not uncommon to get transfusions every day. Her potassium was low, so she received potassium. She had another dose of Lasix to try and get some of the extra fluid out of her tissue. She only has a few pills that she has to take by mouth, everything else has been switched to IV. She can't really brush her teeth because her mouth is so raw and tender and her platelets are so low, but she does mouth care four times a day. First she swishes around some "magic mouthwash" to temporarily numb her mouth, but she can't swallow that, so the numbing stops right before her throat. Then she swishes around Biotine to clean everything. Then she swishes and swallows nystatin (the medicine you put on your baby's gums when they get thrush). THEN, three times a day, she swallows those few pills. Today when she was about to do this routine she asked me to hold on to her. She said, "Get ready. This is going to hurt." Some adjectives that her doctors have used for her are trooper, tough cookie, and rock star. The pain is pretty intense. She decided herself to switch back to Morphine from Dilauded for pain. The Dilauded helps with the pain a little better, but she has weird dreams and can't distinguish what was part of the dream and what is real when she wakes up. She said that last night she started writing things in the air and calling out to Faith. She said she would rather be on Morphine and take extra meds for the extreme itchiness. She continues to have random fevers, and every time it goes over 100.4 they draw labs to run cultures. Thankfully they haven't grown anything yet. Really anything could make her sick. Her linens are changed daily. She can't eat any food that hasn't been prepared there, not that she is eating anything these days. I take her laundry home and bring it back in a clean, large trash bag. Her room is thoroughly cleaned and sanitized daily. (We love Sharon who cleans our room.) Even though she is hooked up to a tall, dark, and handsome IV pole (she has named him Fransisco, her constant companion) continuously, she has to shower or bathe every day to remove any bacteria that might be on her body. I won't take any pictures of that, but let me tell, the two of us in the shower with Fransisco would be pretty hilarious to see.

So things move along. We are grateful for boring days. We are grateful for doctors and nurses who have amazing knowledge and experience. We are grateful for other parents who share their strength, hope, and testimony at hospital church. We are grateful for Claire's amazing attitude. We are grateful for neighbors and friends who leave treats and gifts on our doorstep, who bring us meals, and who put Christmas lights on our house while we are at the hospital. And for some reason, I am even grateful that we are going through this during this time of the year when I can be constantly reminded of the birth of a child who brought light and hope to the world.

               All the wires that are attached to her!

               Sunset over the Great Salt Lake.

               Here is a picture of her sleeping at night with the flash...

             ...and without the flash. It's like sleeping next to a spaceship. Named Fransisco.

             You can guess when she will engraft. Each guess costs a dollar (payable whenever). If you
             win, you get to say, "Yea! I won." but Claire still gets all the money. It's a hospital tradition.