I took J’s mum to see Massimo today and when we got the to hospital, a very nice lady called Mary told us that she had been called to the NNU to teach us how to change Max’s trachy tube! Luckily J could wrap things up in the office quite quickly and come and join us within the hour. Changing Max’s trachy tube is something that we will have to do possibly on a weekly basis, but maybe less often, depending on the type of tracheostomy tube the hospital give us. Most importantly, however, we have to be able to put in a new tube should the one he is wearing get knocked out of position.
As changing his trachy tube effectively means disturbing his airway, the whole procedure has to be planned with military precision. I must say that this was one of the most stressful afternoons that J and I have had in a long time. Max was hungry, which didn’t help, but all in all he was quite settled UNTIL we started fiddling with his tube and then all hell was let loose! The worst thing was that in the 2 seconds it took Mary to take the old tube out and fit the new one in Max’s face went completely purple as he fought for breath. Poor little mite, and then he had to wait whilst we quickly changed his nappy before he got his feed. When we realised that the nasogastric (ng or feeding) tube was actually split at the top and should really have been changed before feeding, we decided that he had really had a bad enough time and that we would feed him first, let him sleep a little and then change the tube. J and I left the unit absolutely exhausted from the sheer stress of it all.
More difficult still is that next week we will have to do it ourselves – with supervision of course – but until we can change the tube with some confidence ourselves, Max will not be able to come home.
The videoflouroscopy happened today and the basic conclusion is that Massimo doesn’t swallow. This is something the doctors suspected but the test confirmed their suspicions, basically that a quantity of liquid at the back of the throat does not automatically trigger the swallowing reflex in Massimo.
They can’t say that he doesn’t swallow at all, as he could be, but he didn’t during the test. We don’t know as yet if it is something he knows how to do but doesn’t do it automatically, or if it is something he doesn’t know how to do.
It was quite a sight watching the four of us (one nurse, one doctor, one father and one mother) wheel the incubator from one end of the hospital to the other laden with all that Massimo could possibly need in his hour outside the NNU! Those in the know will be able to spot a CPAP machine, a portable suction machine, I guess there was some oxygen somewhere, J carried a resuscitation bag with goodness knows what else in it, and that is only the stuff that I recognised! The whole process did not actually take very long. Once we settled Max in the chair – as you can see he wasn’t very happy until he was given his dummy – the hardest part was actually getting 
the barium in his mouth without it dribbling out or being dribbled out (he has learnt this technique for getting rid of excess secretions in his mouth and unhelpfully used it here!).
I did try to encourage the nurse to let us do it later on when J would have come to the hospital, or maybe even tomorrow, so J could organise being there, but I think she had just decided that today was the day, and of course it suddenly became a really good thing to do to soothe him after his injections, etc. etc. The only argument that I agreed with was that it was better to have his bath before his feed. In the end, between the injections and the bath, poor Massimo was fed 25 minutes late and boy does he hate that! He was so tired by all the activity that he was sound asleep by the time 3/4 of his feed had filled his stomach!
