29 Jun Quickly
Just a quick note to say we are all ok and still at home. Keegan’s blood culture from the ER last Saturday (after the second chewing incident) grew back a type of strep that was rare enough that our transplant team hadn’t ever heard of it. Infectious Disease said it is normally found in the mouth. Well, duh. Since labs looked ok and he was clinically stable at home, they just ordered one more week of IV antibiotics (read 5 different IV medications now). We are running the last dose of IV antifungal right now, so at least starting tomorrow we will be down to four. Then if all goes well, down to the usual three by the end of next week.
On Monday, we attempted to let him carry his TPN around in his old rolling backpack (nicknamed Monkey for the stuffed monkey strapped to the front). It went well until mid-afternoon, when he once again tried to put the curly tubing in his mouth. ARGHH! No break this time, but it was enough to realize that maybe the curly tubing needed to go away completely. So now we are loading it into his old feeding pump backpack. I hate that he has to carry it around on his back all day, but it gets the tubing out of his way altogether. Maybe one day he’ll learn to leave it alone.
Audrey had camp at her new school this week, and she loved it. We had a little run in with the realities of a “real” school, rather than a Mother’s Day Out program. Audrey had a few reactions to hummus as a baby. Her pediatrician told us she was allergic to sesame (tahini paste in hummus is ground sesame seeds), and we just avoided it with her since then. So we list it as an allergy on every form from school, only to be told the night before the first day of camp that she will not be able to eat the school-provided snacks and will need benadryl and an epi-pen at school. Well, it was a “kids in the kitchen” type week at school, where they were making their own snacks. All sweets (which was another ball of wax for me altogether when there are so many healthy alternatives), none of which involved sesame. This child has a sweet tooth, so we knew that telling her she couldn’t eat the snack everyone else was having would not fly. Nor had we ever been prescribed an epi-pen for her. No one assumed her sensitivity was that severe. At any rate, we worked it out. She now has an epi-pen and an appointment next month with an allergist to fully explore any food allergies. Not quite the foot we were looking to start out on with her new school, though!
