Today was the day we had been waiting for. Having got through the day I think we can safely say that it is on a par with all of our bad days, except that particular day in February at GOS.
Massimo was second on the list for theatre and between one thing and another he didn’t go until probably around 10.45 am. I was expecting Mr Daya to have a good look and to put in a longer trachy tube and really not much more. I’m not sure what J was expecting. Mr Daya, however had different ideas. I/we don’t know whether this was due to what he found, or whether he had planned it. To be fair, I think I should have had an inkling that he wanted to do more as he had previously said that he wanted to take a decent biopsy sample as this hadn’t been done since he took one in June last year. What he did in the end was take a biopsy from the back of Massimo’s throat, another one from the posterior wall and another from the anterior wall of Massimo’s trachea. Whether either of these last two samples were tumour or granuloma we will only know when we get the results back from pathology, but it seemed to Mr Daya that they were very hard scar tissue, which is what the myofibroma is. The trachy tube was also changed for a thinner but longer one.
Massimo went to theatre at about 10.45 am and he didn’t come back until gone 1.20 pm, over 2.5 hours of waiting. When he got back, Mr Daya came and showed us pictures and explained what he had done. The biggest thing is that all that was achieved in theatre also causes a lot of trauma to the area, so lots of bleeding and inflammation, putting Massimo’s already delicate airway under further threat, albeit a temporary threat, which should improve things in the longer term. Once Mr Daya had explained everything and then gone and the doctors and nurses tried to sort Massimo out, put him onto the ventilator, give him his drugs etc, they realised that the pressures they needed to use to keep his chest open and moving were too high for the ventilator to cope with. They also found that his air entry and exhalation were very changeable, at one point very hard to keep open, and then suddenly slightly easier and then very difficult again. One of the anaesthetists there basically kept Massimo breathing by hand for two and a half hours. They tried to give him an adrenaline nebuliser (which acts similarly to salbutamol the asthma inhaler) to see if that would ease the tightness in his chest, but it was so difficult to maintain his breathing that it was a feat to get any of the nebuliser into him at all. They even prepared another type of ventilator called an oscillator, to try to get him ventilated, but in the end they didn’t use it.
At this point about 2 hours had gone by, and there was large group of people around Massimo’s bed. I sat at the nurses desk at the foot of the bed in a panic and J paced around. Massimo had been given a anaesthetic drug and then put on morphine and medazelam (like last time and the time before!) to keep him settled and calm. We discussed changing the trachy tube, but no-one knew what tube to change it to. Further advice was looked for in the form of one of the consultants. After listening to Massimo’s chest and feeling the pressures that were needed to keep him breathing, his first step was to go off to theatre to consult with Mr Daya (who was in theatre again with another patient) and decide whether a change of tube was a good idea and if so, what tube to use. He came back with the decision that they should try going back to the original type and size of tube as Mr Daya felt the longer tube to be too floppy and liable to kink too easily and therefore that it was not actually achieving the primary goal of keeping Massimo’s windpipe open.
Before the tube change it was explained to us that they had no idea how this tube change would effect Massimo’s breathing and that as a solution it could actually be worse than the current situation. With baited breath, the tube was changed, but we could immediately hear that it was a HUGE improvement. Massimo’s chest was open once more.
He was put on the ventilator and is being kept sedated and settled at least until tomorrow. He has also been given a large dose of steroids which should really help to reduce the swelling in his windpipe and hopefully improve things sooner rather than later. At the time of writing, Massimo is still fast asleep. His bottom is slightly better although it has been rather ignored today. We are hoping for a quiet night and more news on the morrow.
On a very different note, Massimo’s brother or sister to be did not appreciate the stresses and strains of the day and made him/herself felt both in movement and nausea. It seems that this little baby will not take a back seat to his/her big brother without a fight.