We were in the new Day Hospital today. Stanford added a brand new wing and it's beautiful and clean. David had IVIG and Zenopax. I did not get a copy of the labs.
Dr. Weinberg saw how the Protopic ointment is working. I told him it's hard to apply. They only give me a small tube at a time and it does not go on the skin smoothly (I have to wear gloves so some of it sticks to the gloves). We pay $35 per 2 ounces tube! It only lasts about 1 week. Protopic is really good for specific spots, not for the entire body, which is how we use it for David. So, it's not working well.
I announced that we would like to start the Etanercept which is a subcutaneous shot in the thigh twice/week. After they train me, I can do the shot at home which will save me a lot of time. If there are improvements, we will taper the steroids to every other day. They will not taper any other meds at this time. The Etanercept is a strong immunosuppressor. It has a risk of making a person susceptible to blood bacterial infections (sounds like a WAS boy problem without the spleen). This sounds bad, but if you go back and read what our alternatives were, Etanercept looks to be the best option for us at this time. So, starting on March 19, he will get his first shot. That's one more med to the following list:
hydrocortisone (steroid) ointment - 1/day
Protopic ointment - 1/day
Prograf (immunosupp.) - 2/day 5.2 mls
Prednisolone (immunosupp) - 2/day 2mls
Isradapine (blood pressure) - 2/day 2.5mls
Catapress Patch (blood pressure) - 1/week 1/2 patch
Septra (antibiotic) - 2/day 4mls
Prevacid Meltaway (antacid) - 1/day
Zenopax Infusion (immunosupp) - 2/month
IVIG Infusion (immune boost) - 1/month
Etanercept (immuneosupp) - 2/week/subcutaneous
He was amazing today. He gets 4 premeds before the IVIG and it does not knock the boy out. He just loves life too much to let a minute slip by! He also loves his sisters. They give him so much love an attention.
Today was Ariella's 8th birthday! We spent most of it at the Day Hospital but went home for a home made dinner and cupcakes. It was a good day!
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