This morning Mr Daya, our ENT surgeon, called to say that the Royal Marsden has come back to say that Massimo’s condition is NOT rhabdomyoma but myofibroma. Myofibroma is basically still a form of benign tumour. However he said that the difference in diagnosis is rather academic and that the most important thing is that the growth of whatever it is is quite alarming as there has been a rapid growth even just between the MLB and the MRI (just under three weeks). He said he had referred Massimo to Great Ormond Street (the Royal Marsden do not accept babies) and that we would be getting a phone call from someone at GOS and that Massimo would be admitted as soon as there is a bed free.
An oncologist from GOS called late this morning wanting to assess Massimo and very sweetly she said that as we had been looking after him consistently for some time she felt that I was the best person to ask. I told her very honestly that since Massimo’s second set of immunisations on Wednesday I have not been 100% happy with how he is. On Wednesday night Massimo had a high temperature and ever since then he has been alternately grumpy and difficult and then happy and smiling, clammy and hot and then absolutely fine. I said that this could be his reaction to the immunisations or due to the fact that we think he might be teething or just me overreacting. Basically I repeated what J had said to me earlier which was that if we were offered a bed we shouldn’t turn it down.
Alex, a nurse from the Lion Ward (oncology) at GOS, called and we agreed that Massimo would be admitted at 2pm on Sunday, this way we could enjoy the nice weather predicted for the weekend.
Later Maz, Maddy and Kate came to see us and have lunch. We had a good girly afternoon, but Massimo was grizzly on and off all afternoon, and then at one point I was very unsure about how he was and so I decided to put him on the saturation monitor just to check. His oxygen levels were sitting on 94% when normally he saturates at 97-100%. We kept him on the monitor and when I spoke to Helen, Massimo’s Community Paediatric Nurse, we decided that I should bring Massimo in to be reviewed by the Registrar on Freddie Hewitt as she does know him quite well. Whilst getting ready to go in and waiting for J to come home and drive us, Massimo’s rates dropped a few times and although they did pick up they actually dropped to the 70s. At that point I decided to call an ambulance and just get there. Neenars and everything again and we were in resussusciatation where half the paediatric team had rushed over as they got a “crash” call because the one and only thing that had actually been handed over clearly from one ambulanceman to the SGH team was that Massimo’s oxygen levels were 70%! When they saw that he was quite pink they all relaxed! Once Massimo had a bit of oxygen for about half an hour or forty five minutes they took him off the oxygen and he was alert and happy and kicking around. The registrar from Freddie Hewitt came down and it took her four attempts to put a canula in and obviously Massimo wasn’t very happy but the analysis of his blood showed that all his levels were well within normal levels and he seemed to be fine.
We have been admitted to the Freddie Hewitt ward and I have come home for some food and a shower. I will be back in the unit soon and fingers crossed we will be home tomorrow morning. Phew, what a day!