On the Monday (2nd February), Massimo was due his cocktail of Actinomycin D and Vincristine chemo drugs and we were supposed to be going to Great Ormond Street to have these and to have a chat with his oncologist. As he was still on CPAP and still in PICU, we decided, along with the PICU doctors that Justin and I would go to GOS on our own and Massimo could to have his chemo on PICU on the following day. On the Monday, after various conversations with GOS, J and I were about to head off up there when we received another call saying that of course we were more than welcome to keep our appointment but there would be more to discuss the following week and could we make an appointment for then.
On the Tuesday, Massimo had his chemo as usual, but about an hour and a half later he had what the doctors termed a prolonged apnea. In other words he stopped breathing for a significant length of time. The nurse looking after him called for help and one of the doctors happened to be walking by. As there were no monitors on his heart he immediately gave Max heart massage just in case the heart had stopped too. This lasted only for about 15 seconds as Massimo responded quickly by breathing again.
Although he was breathing, he didn’t seem to be breathing very well and he was very sleepy and working hard just to maintain his breathing. The doctors had put him on the ventilator and the machine was really doing all the work but Massimo did not seem at all “right”. After a good few hours when he was OK but really not good, the doctors decided to give him a muscle relaxant to see if that would help him and we also decided to change his tracheostomy tube. In preparation for the change of tube we placed a towel rolled up behind his neck to extend his neck. This is standard procedure, but having done that, and then removed the dressing around the tube, Massimo’s colour changed from a mottled purplish colour to a healthy, lovely pink colour in a matter of seconds. We continued and changed the tube as we were ready to do it, but we left the roll in place and left him to sleep off his medication.
Since Tuesday he has been doing very well and on Friday and Saturday he had a few hours off his CPAP and on just some oxygen. On Saturday morning, however, he seemed to be working hard at his breathing again but by the afternoon this had settled and he seemed fine again. Yesterday he was on oxygen for 5.5 hours then 3 hours rest on CPAP whilst he had a nap and then back on oxygen for 6 hours. He was put back on CPAP overnight. Today he was on oxygen from 7 am this morning until 9 pm tonight and he coped very well. He is back on CPAP overnight and we shall see what the doctors say tomorrow morning. Also as he spiked a bit of a temperature again on Saturday they started him on two courses of iv (intravenous) antibiotics. Hopefully the courses will only be for 5 days and will finish on Wednesday as these would certainly delay any possible homecoming.