thanks for you well wishes everyone. The doctors all got together and have now decided that he needs to get a port. He had a canulla put in Friday which lasted until Sunday afternoon and then despite 5 attempts they couldn't put another one in. So rather than go down the PICC line route which they were planning its full steam ahead on the Port which will get done on Wednesday. Because he does not have an iv line we are on day / night passes and only need to go to the hospital for physio today and tomorrow.
GRIFFINS MAMA - No here in Australia becuase Pulozyme is quite expensive they don't like to prescribe it for children under 5 except in extreme cases. Which they are putting in for now. So hopefully it will go ahead - my 8yo is on Pulozyme and I really think that this is why he is doing so well.