Our attempt at a good night’s sleep was interrupted at 1.30 am by a phone call from PICU telling us that they were finding it extremely hard to ventilate Massimo and that it was a good idea if we went in to see him. We were told not to rush, it wasn’t urgent, but just to come in. Justin was dressed and I was still stumbling around looking for clothes when we received a second call saying that Massimo had settled and of course we were welcome to come in, but he seemed absolutely fine. Under advice from Mr Daya they had already changed his variable trachy tube back to his normal tube as he did seem more comfortable with the old tube.
Our next call came at 7.55 am when we were told that they had had a very difficult night ventilating him and that we should come in as soon as possible. They had been on the phone periodically all night with Mr Daya and he had suggested they change his tube for a wider one and this they were about to do. We were by his bed by 8.30 am. Around his bed were two shifts of doctors and nurses as the night time staff were unwilling to go and the day staff were starting their day. Basically Massimo had been ventilated fine on the ventilator most of the night, but he kept having episodes where the ventilator couldn’t cope and the doctors would have to bag him. (Bagging means squeezing a bag by hand to force air into the lungs.) Massimo has been bagged a fair few times in his short life but today was more serious.
They told us that the pressure that they were using when bagging him were very high and that they had spent all night alternately bagging and ventilating him. Mr Daya came in, as did other consultants. Massimo was prepared to go to theatre but with no clear plan as to what could be done.
Long discussions ensued between Mr Daya and other consultant anaesthetists as to the best thing to be done. Eventually they decided that he would NOT go to theatre, as yet another bronchoschopy might just make a bad situation worse. They concluded that after a week of trachy changes, from long to short and back again, and with multiple bronchoscopies trying to get the position of the trachy tubes correct that Max’s trachea had possibly suffered quite a bit of trauma, and was therefore swelling. In addition to this, the tumour was increasing the pressure on the outside of his trachea. The end result was that his airway was extremely delicate, and prone to collapse.
We all watched as Max was stable for a short while on the ventilator, would then begin to desat, at which point he would be manually bagged, his airway reinflated, and then re-ventilated. All the while, blood would be taken at intervals to see how his blood gas levels where doing. (The sats monitor he is always on can tell the level of oxygen in his blood, but not whether or not he is getting rid of the carbon dioxide). For much of the morning, his CO2 levels were higher than is ideal, but nobody seemed to be implying that they were too problematic.
From fairly early on, it had been Mr Daya’s hope that they could stabilise Max enough to be able to transfer him to Great Ormond Street where they might be able to insert a stent – basically a means of re-inforcing his trachea. In addition, they have a machine (ECMO) which, as a last resort, could be used to oxygenate Max’ blood, and remove the carbon dioxide for him, outside his body – a little like a heart-lung machine. To us this was very reassuring as it would mean – come-what-may, that he could be kept alive.
Mr Daya called GOS. After a wait for them to get back to us, the upshot was, quite apart from the issue of beds (ie did they have any spare), the consultant at GOS said that a stent was not advisable – I forget why – and that ECMO was only viable if there was the likelihood of resolving the problem necessitating it in the first place relatively quickly. Assuming that the problem was caused by the tumour, this was not going to go away quickly.
Essentially, GOS were unable to do anything that was not being done here, and that transferring him would be life threatening anyway.
All morning, the doctors and nurses where fantastic at telling us what was going on, what they were doing and why, they also where at great pains to point out to us that Max’s situation was extremely serious, and that should things get any worse, there was nothing more that they could do.
After a very worrying morning, another meeting of consultants minds decided that Max should be totally sedated and paralysed, as the cycle seemed to be that he would ventilate OK, start coughing – his airway would collapse – he would desat – they would bag him for a while – his sats would come back up and he would go back on the ventilator.
Paralysing him would mean that he would not cough, and set off the cycle. At the same time they fiddled with the ventilator settings, and used very high air pressures (high even for an adult) to keep his airway open. The combination of these two things seemed to result in a long spell of stability, indeed at time of writing (12 noon on Sunday) he is still stable with a rare but manageable desat to the 70’s or 80’s when trying to reduce the pressures on the ventilator.
The feeling seems to be that while these pressures are worryingly high in most circumstances, and can damage the lungs; in Max’s case it may well be that the pressure is holding open the airway, and may be dissipating by the time it gets to his lungs. We will see.
With Max stable, and our nerves totally frayed, we decided (once again thankful SGH is only 5 mins from home) we would go home, have something to eat and go to bed. The nurse looking after Max said she would keep us abreast of anything, and when S. took over at 8pm, she said she would call us with gas results and changes in pressures etc.
We then called at about 11, were reassured that he was still stable, asked if Ss could call if anything deteriorated, but otherwise call us just before she finished her shift at 8am to tell us how his night had been, and went to bed.
Thankfully, S. did not call us before 8.30 this (Sunday) morning to say that he had remained stable all night.