Massimo’s Italian grandmother died on 26th November 2003 at about 6.10 in the evening. Her funeral will most probably be on Wednesday 2nd December at 12.30 at St Mary’s RC Church, Clapham Park Road. As she will be repatriated and buried in Italy next to her sister we ask that in lieu of flowers donations be made either to Trinity Hospice, who looked after her so well, or to Friends of the Neonatal Unit.
She will be sorely missed.
Yesterday afternoon Massimo came home after 40 days in hospital. He has a very bad cough, a cold and lots of dribbling due to the imminent (we hope) arrival of a few teeth. Other than that he is very well and seems happy to be at home. We, of course, are over the moon but having to get used to sleepless nights again! He seems to have grown whilst he has been in hospital and he has certainly become more mobile – turning his head, flipping over from side to side etc. We shall endeavour to take some more pictures for you soon.
Massimo was transferred back to Freddie Hewitt last night at around 8pm. He was still on a little oxygen (0.1 litres per minute), especially when asleep, but not really needing it when awake. He was cheerful enough although they had done a routine trachy change in the morning. He and I had a lovely cuddle and his control of his head is improving every day – what a clever boy!
His nurse Sally has just called to say that he came off his oxygen completely this morning and that she gave him a bath this morning and he giggled all the way through! He is now only on 10mcg (a very small amount!) of Clonodine twice a day and they reckon he can come home very soon. He has been in hospital this time since Sunday 5th October – that was over 5 weeks ago and it is very exciting to think that he will be home again soon.
… and a return to PICU! When Justin and I went to see the wee man early this afternoon his breathing was laboured and very noisy. He seemed unhappy and when the doctor reviewed him, she was concerned that as he was working hard on his breathing he might then get too tired and need some CPAP support. She decided that it was safer to keep an eye on him in PICU rather than on Freddie Hewitt.
However whilst we were transferring him downstairs he seemed to perk up and started smiling at all and sundry! He is coughing and sneezing and full of cold however by the time we left this evening, he was fast asleep and settled although his breathing is still noisy. When I spoke to his nurse this evening she can’t believe how well he is and, although she would never try to second guess him, she doesn’t think he needs to be on PICU any more! If all goes well, Massimo will be back on Freddie Hewitt tomorrow and looking forward to a whole day playing with Sally!
I spoke to Massimo’s doctor yesterday and she said that, at the moment, they are thinking that it will take until about Monday or Tuesday to wean Massimo off another of the drugs that he is on. The medazelam was weaned successfully although I think he missed it at first, but he has been getting another drug called chlonodine to help him come off the medazelam. Massimo seems to be currently suffering from raised blood pressure and this can be linked to the steroids that he is taking, however coming off the chlonodine can have a detrimental effect on his blood pressure, even though he is already on medication to keep it under control.
The doctors rightly want to keep a close eye on him while the chlonodine wears off. Other than that he is a very cheerful little chap as you can see!
Since last Sunday (26th October) Massimo has been getting better and better and last Wednesday (or thereabouts) he came off the ventilator and onto CPAP. He was on CPAP a couple of days before they put him just on oxygen for a few hours at a time, and then on Saturday he was just on oxygen permanently. Yesterday he was only on 0.1 litres of oxygen a minute when the day staff took over and they took him off the oxygen at about 8.30 am and he managed brilliantly all day. As far as various other medication is concerned he is not on any more of his muscle relaxants and he has been weaned off his morphine gently over the last week. He is also being weaned off his midazolam – the sedative that he was on for a long while and which he seemed to suffer withdrawal symptoms from last time he was doing well. This is due to be stopped completely today and we must hope that he doesn’t suffer withdrawal symptoms again this time round. Massimo was due his cocktail of chemo and this was administered at about 6 pm yesteday on PICU.
Continue reading “Back again to Freddie Hewitt Ward”
