It’s Massimo’s First Christmas!

It has been an awfully long time since our last entry and unfortunately Massimo has not managed to make it home yet. He seemed to get better and then on Friday (12th) we found an infection around his gastrostomy and started a course of oral antibiotics and then on Sunday (14th) he spiked a temperature and started two courses of IV (intravenous) antibiotics.

On Sunday 14th was also the Neonatal Unit Christmas party and although Massimo didn’t make it to the party, his little friends came up to Freddie Hewitt to see him. Ned and Wilf had their first fight (as you can see in the pictures) much to their mothers’ amusement and Alfie has grown so much he is hardly recognisable. (Kim and Alfie are in the first picture with Massimo here and he was much, much smaller then!)

We were due to go to GOS mainly for an MLB (look down his trachea to see what the tumour is up to) and off we went on Monday, bright and early and by ambulance – neenars and everything got us through the rush hour traffic – but when we got there the anaesthetist quite rightly said that Massimo really wasn’t well enough to put under general anaesthetic. So we had our chemo, changed our temporary gastrostomy tube for a proper button again and then discovered that transport was not available to bring us back to SGH until the Tuesday. We re-booked the MLB for the following Monday and set off back to SGH the following day.

We spent the week at SGH, Massimo seemed to be getting better on Thursday (18th) and Friday (19th) but he never quite came off his oxygen, and then on Sunday (21st) I felt that Massimo’s breathing wasn’t quite right but off we trotted on Monday (22nd) morning back to GOS. This time I really thought he was much better but when we got there he had a temperature of 37.9ºC and a wheeze again. By the evening he was very unsettled, his stomach looked distended and his breathing had got worse. His oxygen requirement went up from 0.5 litres per minute to 2.5 litres and his heart rate and breathing rate were both elevated. The worst thing was the state of his bottom which had got so sore due to the chemo that it was bleeding. He has since spent most of his time with no nappy on and his tackle on full display but it does seem to have had a very slight positive effect on the sores.

We chose to stay at GOS on the Monday night even though Massimo was not having his procedure as we had organised to stay with a friend up in town that night, but on Tuesday SGH told us that as they have closed the Freddie Hewitt ward and moved the patients to either Pinkney Ward or Nicholls Ward we couldn’t come back as they didn’t have a bed for Massimo! So we stayed another night and this morning Massimo came over, accompanied by two very lovely GOS nurses, and Justin and I met him on his arrival. He is installed in Nicholls Ward directly opposite the nurses station so that they can keep a close eye on him. He still has quite a high temperature although regular paracetamol is keeping it under control. He still has a distended stomach, but his oxygen requirement has come down to 0.75 litres per minute.

Justin and I changed his tracheostomy tube this evening and after that he was pretty exhausted and has since been asleep most of the time. As far as tomorrow is concerned, he will be reviewed by one of the doctors in the morning and a decision will then be made as to whether he can come home on oxygen for the day. Daddy (my daddy, Roberto) will not be allowed to join us for the day as they found anther infection today and have started him on an aggressive course of IV antibiotics. So goodness knows what tomorrow will bring but we will try to make the most of it. We hope to be able to post some photos for you at some point soon.

Merry Christmas to all, thank you all for your cards and best wishes and above all for taking an interest and following Massimo’s story.