We spent the day downtown at TCH. Our sweet love lost weight again. We meet the dietician again. We increased her feeds again. She had five needles shoved in her little body – flu shot, synagis, and attempts at blood work. She was hysterical. She was shaking her head no and desating. I would so love even one doctor to watch them try to take her blood – just one. It kills me, but they won’t OK a portacath. Anyway…came away with four new meds. Turns out she has had Rhinovirus. With it going on for over a month now, we are starting some Gent. We’ll see. She also changed up the allergy med – hoping that will help some. Her GJ stoma and trach stoma have been very red and sore for over a month as well. We tried one med last month. This month we are trying two different meds - Clindamycin and Triamcolone.
And….we got OK’d for a swallow study! Her OT is going to do flips!