We were in for Zenopax on Thurs. It was slowwwww service that day! A 1 hour appt. turned into 3 hours.
David's labs looked pretty good. They are doing CBC only once/month. The chemistry's looked pretty good. His liver and kidney numbers were really good too. Yeah!
His phosphorus was 2.9 which is still low but looks good. I started to give him the Whole Foods brand of liquid vanilla flavor Calcium, Magnesium and Phosphorus. It has 600mg/2 tablespoons. He was only getting 250mg with the small packet of phosphorus prescribed by the doctors. We'll see how the supplement works. The NP did not have an issue with me giving him the supplement.
His blood pressure is still high. I finally ordered a cuff for him so I can monitor him at home. I also finally ordered the Colostrum and probiotic which the doctors o.k.ed for him. It has taken me a long time to order these items because I am so busy and don't have a lot of time to research which cuff is best, etc. I just ordered one that looked fun and hope it works well. Now I'll have to learn how to take the pressure using the cuff and stethoscope. Fun! Fun!
The doctors want to have a "pow-wow" about what options we have for treating David's skin GVHD. They are going to recommend some other treatments because David's current treatment is not working well. They do not want to increase the steroids. They would rather try a different treatment and if that works, wean him off steroids.
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