On Sunday his Hickman central line burst a hole right above the split off. I took him to emergency. Every step along the registration process, I reminded them that he is immunosupressed and cannot sit in the pediatric waiting room with sick kids. They provided excellent care. Leslie from 2 north patched the hole. I'm so happy the situation did not require surgery. We were there for 4 hours. Michael took the girls bike riding then he cooked dinner for all of us.
He's feeling a lot better now that the steroids were increased. I learned that when the steroids are reduced that the body forgets how to make cortisol, so he looses energy and occasionally feels depressed. If a person is on steroids for years, the body can completely forget how to make cortisol and has to get hydrocortisone injections when he does not take his steroids.
I'm learning a lot from the GVHD listserve.
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