The Day After
I had started my pilgrimage to Westmead a little later than planned, and unfortunately, this meant I ended up waiting 10-15mins inside the carpark waiting for a car space. I had missed out on the last available carspace by 1 car length! The white van got it - it was on the rooftop, so I wasn't massively disappointed.
When I arrived in the room, Jeremy was sleeping. The play therapist had come and gone (it was better for him to sleep than play). We were still a bit bewildered with everything, and in the afternoon, we managed to speak to 2 members of the BMT team. This was reassuring, as we managed to ask some questions and get a feeling of what to expect. We were also advised that the whole BMT team has a weekly meeting with the family, and the meeting includes representation from nursing and one of the dieticians.
He didn't eat all that much today, but he did manage to eat some marshmallows and some frozen blueberries. Other than that, we have been told not to worry as the nasogastric feeds are sufficient for his requirements - anything extra is a bonus!
We have been told to expect that the next 2-3 weeks will be the worst. Things are expected to get worse before they get better. In their view, Jeremy is doing well given the circumstances. We are hoping and praying that Jeremy will not have a severe case of mucositis - he is starting to show signs of this happening with very thick stringy saliva, and a bit of a hoarse voice at times. We also pray that he does not have any complications or infections, and that he stays the happy cheeky boy that he is.