So, unfortunately and heartbreakingly, Sophie is back in the ICU with a vicious bacterial pneumonia. She was transported via ambulance to the ER on Saturday late morning because I just couldn’t get ahead of her secretions and didn’t know what else to do. The ER was fairly efficient in taking an x-ray, blood, coming back with the diagnosis of pneumonia but needed to admit her so we were transported up to a ridiculously enormous room that I later learned was for VIPs. After the clusterfuck of being there and not being tended to (I would say later that we were checked into a hotel room), being told that the nurses were overwhelmed because it was the weekend (why is this a thing? Pneumonia is not 9-5 and why do they short-change these wonderful nurses this way? It must be another grand element of The Great American Healthcare System), a bit of hollering for nurses and doctors when Sophie began spewing green phlegm out of her trach and no one was to be found, a lot of hollering from Oliver, who, it turns out, has a giant brother mind™, a very lot of tiny mother mind™ speaking in a raised voice to a doctor on the telephone about how you are killing my daughter, being transported to a step-up room where the care is more intensive but not as intensive as intensive care, arguing about cannabis (again) and being told that Sophie doesn’t qualify for cannabis, asking for some accountability for the clusterfuck of the day (when in addition to the above, Sophie received no meds, fluids or food until midnight), watching Sophie have her first tonic-clonic seizure in over ten months (see above for reason), the appeasement of the tiny little mother mind™ with the instant appearance of the cannabis approval, and, finally, the next morning Sophie literally crashing and requiring a rapid response team to revive her and take her to the intensive care unit where she is now receiving excellent care from a bevy of nurses and wonderful doctors. She is on Big Gun Antibiotics, They have determined that the bacteria was most probably a hospital borne one perhaps even from the hospitalization last year or when she had her trach changed in the hospital last summer. They used the word colonized which I will never open my mouth to actually say because it repulses me so much. Sophie is stable but requires oxygen and is fighting to get well. I am both dissociated from the horror and crying in the dark hours of the morning. This morning, my dark and dogged sense of humor returned when I walked into Sophie’s room and saw the above note. I will tell you about that another time and you will laugh and laugh and laugh.
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love love love to you and Sophie and your family. fuck fuck fuck to the whole medical system that doesn't get it. Bless you, dear Elizabeth, for writing and fighting and swearing and loving. And oh, dear Oliver! Holding you all in my heart.
Darling Elizabeth I’ve been so worried about you and Sophie even while knowing my worry is a minuscule drop in the bucket of what you’re going through. I can’t imagine. None of us can. I offer love and daily recognition of your trials and all manner of warrior woman vibrations to work through the always hideous hospital. Oliver is a marvel. Love, Rebecca