J and I spent all day today at the hospital and have only just managed to get home. We knew that Massimo was on the afternoon list and that he would have his last feed at 9.30 am but only of breast milk (formula can only be given up to 6 hours prior to a general anaesthetic). At about 2 pm the nurse looking after Massimo phoned the anaesthetists to find out if she could give him some glucose and she was told that the first person on the list had only just gone onto the operating table and that there were 2 more children before Massimo. 100 mls of glucose later Massimo fell asleep. At around 4.30 pm we were told that the first child was still on the operating table and that they still had a way to go, so J and I went out with Tara for an ice cream in Russell Square.
At about 6 pm we were try to decide what to do about supper and the beasties back home and generally trying to make a plan so I called the Peter Pan ward quickly to see if there was an update. Sabrina, Massimo’s nurse, told us that as Massimo does not need either of his procedures in order to get through the night, he would probably not be going to theatre tonight. By the time we got to the ward at 6.15 pm, the plan had changed and they were planning to take him down in 45 mins. He finally went to theatre at 7.30 pm and came back from theatre at around 9.30 pm. He was asleep and had been given quite a lot of pain relief. He basically stayed asleep until we left at around 11 pm and the likelihood is that he will stay asleep until we get back to the ward tomorrow. Now that Massimo has his gastrostomy in place the ng tube which he has always had on his face and which has always marred his beauty has now finally gone. We will take some pictures soon but that all depends on how he feels tomorrow and whether or not they will give him his first bout of chemo tomorrow or Thursday.
The reason that I have come home again tonight is that Massimo has been moved out of his cubicle where there was space for a camp bed for me and into a ward. It is unusual for a child under 1 to be put in the ward however a tiny baby had to come onto the ward and they needed both Massimo and the tiny baby to be near the nurses station and the only way to work it was by putting the baby into Massimo’s cubicle, and Massimo into the ward.
We will be moving from the Peter Pan ward to the Lion ward at some point tomorrow, probably in the late afternoon. We really hope that we will be discharged before the weekend.