We are back home from our weekly Cytoxin and Methotrexate treatments. Gary is doing. He is doing OK. We suddenly have a return of raging rash activity in his skin. It has me a bit worried with increasing levels. The doctors are talking about adding new drugs.
He has not been this raging red since May when we were first diagnosed. No we were not in the sun. This picture was after an hour after his IV was put in BUT this is not his normal. It is really tough seeing different doctors each week. It may be time to but our back up plan into action. DR. P Our main doc was not there this week so I had to deal with all the nonsense. Nonsense of starting a drug that I thought we should be on. There talking a completely different one then our doc talked about. "Maybe Cytoxin isn't his drug." Maybe I should lay on the ground and kick my feet and grit my teeth and scream right in the middle of the hospital. I know that will get me know where. Profanity. His levels were good I guess. The one that was up last week won't be back until later this week. I fought to get the tube out but I lost my debate. It ended with this. "Do you know how to administer the heimlich to a toddler? What if he was choking on a hot dog. " My reply, "I don't give him hot dogs. There high in sodium!". We had to increase his blood pressure medicine because that has been up since last week. Obviously we did not do any tapering this week of his home steroid. His knuckles and hands have begun to break out again in the Gottrons Papules . Would make no sense to taper off again. The activity in his skin especially on his face is evident. I assume they will be calling me this week to discuss. Or not since we go back in on Monday. My positive piece for this entry, we had our own room. No hallucinating patients this time. Nurses were great. I love loved our nurse when we got down to the our room. She was on top of everything this time. It must have been National Intern Med Student day or something. A whole lot of them were peaking through the room. I would have let them in but he was fast asleep. Next time.