When I went to see Massimo later on the Tuesday afternoon he seemed very settled. I was told that he had slept lots and his secretions from his trachy had become whiter in colour (rather than yellow) and his temperature was under control with little or no paracetamol and ibuprofen. We had a cuddle but he soon fell asleep again. He obviously had a lot of rest to catch up on and he was oblivious to his father visiting later on. Of course he was wide awake later on and a little unsettled, so he was given a little sedative and he went off to sleep again.
Over the day Massimo’s CPAP settings had been reduced in two stages, from a peep of 10 to a peep of 5. Then this morning he was taken off CPAP and put back on his thermovent (Swedish nose – the white filter that sits on his trachy protecting his lungs from dirt and cold). He was originally on oxygen, but as this is his favourite toy, he was playing happily with the tubing and saturating well (maintaining good oxygen levels) so they turned the oxygen off. He remained like this all day, and although his breathing is still a little wheezy and he is still working hard to breathe out, he has managed well. We could have brought him home tonight, but we decided that we need to get a little more input from the doctors as we want to discuss putting a longer trachy tube in and we would like a surgeon to have a close look at his gastrostomy, which is currently behaving, but the hole doesn’t seem to be healing properly.
So it looks as though the trip to France is still a possibility so today I packed all of Massimo’s medical equipment and we have one very large and very heavy box, and a further two smaller, lighter boxes. I have also packed his clothes. Tomorrow morning I will attempt to pack the rest. I have little hope of getting any sleep on Thursday night as we need to leave the house at 4 am and there will be lots of last minute things to do!
Fingers crossed.