The news from the hospital is very positive. On Friday morning we had an appointment to see the doctor who has been looking after Massimo over the last 2 weeks. She wanted a chat with us as she was handing over to another doctor for the next 2 weeks.
She said that the ENT Paediatric consultant is not planning to have a “good look” at Max’s windpipe until he is about 3 months – this is to give him time to grow and get stronger. Until that happens we will not have a complete understanding of what is causing the narrowing in the trachea. She repeated that the ENT consultant expects the tracheostomy to remain in place till Max’s first birthday, we have read on the internet that often these ops aren’t done on children before the 2nd birthday, so that is what we are expecting really.
She also said that Max’s movements etc were very positive and that she was “quietly confident” that he will have little or no brain damage but that this could not be verified until Max is much older and can have a proper MRI scan done. The EEG (checking brain activity) on Friday showed much improvement on the EEG from a week previously – in itself a good sign. He has been off the ventilator and on the CPAP since Friday evening and he seems to be coping with it well!
I had my first cuddle on Thursday and another one today, unfortunately J wasn’t there for either of them!
I attach a picture of Massimo taken on Saturday 15th Feb. He is looking quite grumpy in it which we find very sweet (the doting parents of course!). The iv which you can see on his left arm has now been removed and other than his trachy (and CPAP) and his feeding tube (the one in his nose) he has no other tubes or wires on him at all, except monitoring ones.