It was decided that Ashtyn needs to stay in the hospital until at least Monday. Her kidneys are still injured which requires nighttime electrolyte fluids. Her marrow still has minimal cell production which makes her need platelet transfusions 3 to 4 times a week and red blood cell transfusions weekly. In addition, her white blood cells are still low with an ANC of 700 so she needs a marrow stimulant medication G-CSF from time to time. Daily she swallows more than 50 additional pills. All these issues will take time to resolve and meanwhile can be managed outpatient, but more time is needed to safely leave the hospital. The exact amount of electrolytes in the nightly fluid is still being tinkered with and discharge logistics need to be ironed out to guarantee a smooth transition to the outpatient team. It is often said by many at Primary Children’s Hospital and Seattle Children’s Hospital, that she is a “unique”, “unusual”, “complicated”, “challenging” patient who is “sometimes a mystery”, “makes us think”, and “keeps us on our toes.” Non of those words are ever said negatively but rather with the highest respect and admiration for Ashtyn. She would love to leave the hospital as soon as possible but is handling the delay with grace. What also broke her heart was hearing the news that Marlie is not allowed to stay at the Ronald McDonald Apartments with us. After crying for awhile, I sensed a calm in her. She said, “I’m learning to let go of things I don’t have control over.”
Morning Medications
Marlie
