Immunizations...part 2

Here is a little update to what has been going on with Zander's muscle bleed. We infused through the IV at home on Saturday and Sunday and then when I went to flush it Sunday night it wouldn't work. So I pulled the line and I called the on call Hematologist on Monday, he told me it would be fine since we were going up on Tuesday to the center.

His leg is still feeling pretty warm and it is still swollen (that hasn't gone down at all) his nurse at the center was a little surprised by that. Both his nurse and the PT agreed that a couple doses a day would probably benefit Zander. When his hematologist came in he said he thought a few more days of infusions would be good but just once a day.

I felt very frustrated that neither the nurse or the PT said anything about doing it twice a day, so I asked. The doctor said no, once a day is fine. The reason I was curious about this is because a few weeks ago they tested Zander for an inhibitor (he doesn't have one) but they did find that he metabolizes his factor VERY fast. I guess I understand not wanting to second guess a doctor but both Travis and I agreed that factor two times a day is what we wanted to do and what we felt was best for Zander. We are told all the time that as parents, we are Zander's advocate and that we have to do what is best for him. When the doctor left the room we told the nurse that we were still wanting to do infusions a couple times a day, she was VERY professional and said that it is our choice and when we are at our house, he is in our care, and that we decide what that is.

I think from the time we are young we are taught to accept what doctor's say at face value and that there is no need to question a doctor. I just feel like a doctor spends two minutes with my son and makes his opinion, I spend all day and all night with Zander and it is STILL up to me to say what is best, even if that means going against the doctor;'s orders.

We have another IV in and will infuse for a few more days, I will post how it goes.

(the picture doesn't do the swelling and bruising justice)