Today has been a bit better! I thought we were doing good, glad we pushed to go in on Tuesday even if it meant two appointments...the gvhd is definitely intensifying. He has had red cheeks all day but itching only lasts about a half hour before dose and about an hour after taking it. Only mild nausea (no buckets today or zofran!) He is very puffy today from fluid retention but other than that feeling better than yesterday. I dont know what we will do when we start weaning again. UGH. The way it affects every organ/system in his body is uncommon. Dr Hock suggested when he called on Tuesday that Dr Gilman is probably planning on starting the cut back on Monday when we see him, he also said he is just trying to mind read based on conversation. I know we need to get off these steroids for a multitude of reasons, but the chaos that ensues with Chris is terrifying. We will know more of the plan on Monday. Hopefully this positive trend continues. Hes up to 40 mg of prednisone daily so it really should keep everything in check once its fully in his system. Hoping and praying he has a little fun this weekend, it obviously is good for his creatine levels since our first little excursion away since discharge and they improved quite a bit!! Please continue praying for forward movement and for him to be comfortable while going through these adjustments. ~Michelle
Posted on: Fri, 17 Oct 2014 02:06:14 +0000
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