The good bit first. Massimo’s ventilator settings have been reduced all through yesterday (from a Peep of 10 to a Peep of 6 in one day) and this morning he was put on CPAP. He seems to be coping well and they are planning on slowly weaning him off his sedation. Apparently coming off midazolam is much like giving up heroin with all the side effects. As we know that in October he did suffer quite badly with withdrawal they won’t be weaning him at any great speed.
Our meeting yesterday lunchtime with Massimo’s Intensive Care Consultant, Oncologist and ENT Surgeon was a very difficult meeting to such an extent that I actually walked out before the end.
Basically, although Massimo seems to be getting better at the moment, they were talking and thinking about the future and what they can sensibly offer when this sort of episode happens again. Massimo’s tracheal malacia (floppiness of his airway) has now extended to beyond the biforcation of the airway and into the two main bronchi of the lungs. The only reliable way to keep the airway open is by using three metal stents. Not only is using three stents very unusual, they can also cause a lot of granulation and therefore a constant need to be in hospital and probably in PICU whilst getting rid of them.
However, their main concern is that stents will only buy us time and there is no point buying time unless we can do something constructive in that time. The tumour can’t be removed surgically, it is too big. The oncologist has admitted that the likelihood of the chemo working is also relatively slim. This is a benign tumour and the hope is that it should grow to a certain size and then shrink and shrivel away all on its own. The big question is how long will it take before it starts shrinking, will Massimo still be alive that long and, if he is still alive and the tumour goes away, what damage will it have left behind. So again we were back at the question of what will his quality of life be?
There were a few new things that came up for us to consider. We know the damage to his voice box and swallow reflex will mean that he will probably never be able to speak or swallow. Assuming the tumor goes away, and there is anything left of his oesophagus, it is likely that Massimo’s lack of swallow reflex would mean that secretions would build up in his lungs, thus further reducing his ability to breathe well.
The conclusion is that, in their view, the next steps to take are limited to palliative care (ie relieving or soothing the symptoms of a disease or disorder without effecting a cure).
We are needless to say devastated and we are struggling to come to terms with what this means. In the immediate future we are looking forward to getting Massimo home as quickly as possible. When he is here we are planning to enjoy each and every moment we have with him.