WE went to see Dr. Paul Carpenter again at the SCCA. He is the doc from Australia that eats kangaroo. (yet again another story for another day) He was our attending when she first started to have Gut GVH. He put her on a course of steroids and the like. As we so politely pointed out yesterday: You did not fix her!
I explained that I really did not want to return to Children’s for another round of Chef Walter food and days of Dark Shadows watching.
So here is the plan: She now is being tapered in a very different way. She is going to be taking Pred on one day, HydroCortoson on the next day. She is going to taper off the icky corn oil stuff and the noisy pink pills and then try to get off the Pred. Or something like that.
It appears to be pretty endless but then it was pointed out to me we signed on for a year. Not six months. Not 9 months but for a year. I was questioned about what I was doing and whether or not I was home being care taker. I did not mention I had abandoned my child for 6 days.
So we wait, we see, we wait some more.
It made me so so glad to know the Dr. Paul does have a beautiful Crystal ball that he consults on a fairly regular basis. He did say it appears to be cloudy most of the time.
We can wait, half way there.