Since the last entry on Tuesday we have had a few difficult days. On Wednesday Massimo was due to have his tracheostomy changed for one with an adjustable length. The hope was this will hold his trachea open beyond the end of the tumour which is on the outside of the trachea squashing it shut. I was under the, possibly misguided, impression that this would be happening in theatre on Mr Daya’s morning surgery list. Unfortunately Massimo was not on the list and Mr Daya’s registrar came to see Max and said that he wasn’t going to theatre as the variable tubes hadn’t arrived yet. In actual fact the tubes had been in Massimo’s cubicle on the ward since Friday. The sister on the ward (or is she a Senior Nurse?) tried in vain to contact Mr Daya’s registrar with this information but the registrar never called back, however we were told that Mr Daya would come and see Massimo at lunchtime. Lunchtime came and went and next thing I found out Mr Daya had gone down to his afternoon clinic. Massimo had been nil by mouth since 3 am as we assumed he was going to theatre but at 9.30 his nurse took pity on him and gave him a feed.
Telephoning his secretary we managed to get an appointment for 3 pm but at 2.20 pm, Sally, his nurse, Massimo and I were already downstairs waiting to see him! Once we saw Mr Daya and the matter of the absent but present new tracheostomy was straightened out we changed the tube and Massimo, breathing much better, was returned to his cubicle on Freddie Hewitt Ward. Unforunately, when Sally suctioned him back in his bed, Massimo tried to grab the catheter, his new trick, but instead of grabbing the catheter he grabbed the excess tubing of his tracheostomy and moved it by about 0.5 cms. Massimo’s breathing rapidly decreased again. Mr Daya was called and he came up, readjusted the tube and all was well again.
Overnight Massimo was very unsettled and his breathing quite laboured and difficult. By doctors’ rounds on yesterday, Carole (Ward Sister) was very concerned and I was told that she insisted that Massimo was transferred to PICU. When Massimo arrived on PICU they changed his trachy tube back to the normal tube and put him on CPAP. By the time I arrived at about 11.30 am, the ENT registrar was already waiting for me to sign a consent form for a bronchoscopy. In theatre the trachy was changed again for the variable length one, but placed very precisely, under the scope. He came back from theatre on the ventilator and was allowed to wake up very slowly. When they thought he was well enough they put him on CPAP. Things seemed OK that afternoon and evening although not brilliant but we knew he was getting fantastic care.
On Friday morning when I went in to see him he appeared very unsettled. His heart-rate was very high (180-210) and he had had a bit of a fever since the night before. The nurses asked what I thought of some gentle sedation, which I agreed might help as it might lower the heart-rate and help him get some rest. After lunch when I went back with Lizzy he seemed even more unhappy. A second dose of sedation seemed to make no difference, whereas the first dose had helped him sleep for 45 minutes. For the rest of the afternoon he seemed very unsettled and nothing seemed to help him much. At some point his colour started looking quite odd, but his numbers were all OK. His heart rate was still high. I had been calling J all afternoon keeping him up to date with what was going on and at this point he gave up trying to work and came in. The doctors decided to sedate Massimo more heavily and put him on the ventilator. Finally he seemed settled, his heart rate came down a little and he drifted off to sleep.
It had been a very long and stressful day for us and we went home hoping that Massimo would get a good night’s rest and we tried to do the same.