Alli has been collecting beads since she was first admitted to the CICU at Egleston in November of 2011. Each bead represents a medical challenge she has had to overcome, primarily cardiac related. She has beads for everything from an overnight stay in the hospital to needle sticks to her open heart surgery. As of yesterday she has earned over 300 beads primarily from her cardiac admissions. That does not count her PICU stays. When I get the chance, I will post a picture of her beads. Sometimes I pass the time in her hospital room by arranging and rearranging them. Someday they will help us tell her, and others, the story of what she has medically endured over the course of her life.
She continues to make steady progress. Last night they did their first CPAP trial to determine how well her lungs function without the assistance of the ventilator. She will continue to have these trials over the course of the next 24 hours. The objective is two fold - 1. to restrengthen the lungs to be able to breathe on their own and 2. to determine her level of readiness for extubation.
The physical therapist came by for a visit yesterday afternoon and is working with Alli on stretching and range of motion. She will continue to make visits during our stay to help Alli get back on track from a PT perspective.
The plan for today is to remove her chest tube, continue CPAP trials, and adjust her formula to be less calorically dense, but maintain the same level of vitamins and minerals.
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