Today at 14.00 there was a multi-disciplinary meeting at the hospital to discuss Massimo and his transfer from the NNU into Community Care and Paediatrics for his future care. We joined the meeting at 14.30 and we met a variety of people. I had already met most of them but there were a few new faces for J. We discussed who would look after what in terms of Massimo’s future care and we discussed what was required of us and of Massimo in order to bring him home and what the plan was for getting him and us ready for his homecoming.
We also discovered whilst at the meeting that Massimo’s head has had another growth spurt. This would indicate another increase in the level of fluid in his head and this will be checked with an ultrasound scan in the next few days. It is possible that this will happen again in the future and a plan was made that the Community Nurse will take regular head measurements to watch out for any further increases. If this continues to happen, Massimo will require a shunt to drain off some of the liquid. His condition is Communicating Hydrocephalus, i.e. there is no blockage (as in non-communicating) and therefore although there is increase in fluid but no related increase in the pressure on the brain.
The really good news, however, is that a plan has been formed for J and I to do a tracheostomy change next Tuesday, for us to “room in” over the Easter weekend, a further tracheostomy change the Tuesday after that, with a view to Massimo coming home on Tuesday 22nd April!
Of course, a lot can happen between now and then, but this is the plan and this is what we will be working towards for the next 12 days.