Thank you Bostonian, Abyaya Jyoty and Lokkhi maa - I wish the very best for you as well.
Little A's levels are good now - and we thank you for your prayers.
My issue right now is that the hospital nurses complained to our doctor about us calling to ask for his hemoglobin. The doctor forbid us from asking for his hemoglobin anymore. This is very sad and difficult because if the doctor leaves without checking - which he often does - we have no way of knowing what his level is. He is very difficult to match, it sometimes takes 3 days to find a match. If his levels are low we now have no way to know that a cross match is required. When we are concerned that he has suddenly gotten low we often send him in for a blood test. If the staff finds it convenient they will book him a transfusion but usually they are short staffed and they only book him in when it is convenient for them.
Right now I am in a state of panic because often his hemoglobin can drop very low with no warning. The nurses do not feel obligated to tell the doctor - and until he checks we will have no way of knowing. I am beyond frustrated with this archaic and selfish system. Where I don't have access to or decision making power over my son's health care. Basically I have been informed that the doctor will decide if and when he will receive a transfusion and if his hemoglobin drops to 5 every time then that's too bad.
Please excuse me for my rant but I am at a loss here
![:(](http://www.thalassemiapatientsandfriends.com/Smileys/classic/Frown.gif)
Canadian Family, have you encountered this in Eastern Canada?