With our heat wave over, a rainstorm has hit the Sacramento area. Ben has been doing well but seems to be getting restless being indoors so Ryan and I took him to the mall today. We picked out a birthday outfit (yeah!) and let him play in the kid area. Tomorrow we are heading up to Truckee to visit my parents who are skiing up at North star. I’m excited to put Ben in the snow again!
He is still coughing so UCSF is having us add Xopenex, a bronchodilator, into his TOBI meds. The Xopenex will help open his lungs, letting the TOBI get in deeper. Luckily, we had some Xopenex from when Ben was first born. He was put on it twice a day but later taken off. Makes our treatment time longer but I hope it will help kill off the pseudomonas.
He has also been put on an extra dose of vitamin D. His levels came back a little low, normal range is from 30-100. Ben’s level was 27 so he now takes vitamins ADEK twice a day along with an extra dose of vitamin D. I’m sure once summer comes he won’t need the extra dose. A week in Hawaii will give him plenty of sun!