Author: Silvia

Massimo did come home for Christmas day. The doctor examined him bright and early and then kindly called to give us the good news. When we went to pick up the wee man we popped in to say a quick Merry Christmas to Nonno Roberto and deliver some smoked salmon to accompany his lunch (we think this was more appreciated than the visit!). Unfortunately Massimo didn’t feel brilliant whilst he was here and after a stressful half an hour coughing and with a temperature he spent the rest of his visit sleeping. He did however see Father Christmas on the ward before he came home and he has been thoroughly spoilt by all and sundry! A few gifts are in evidence in the picture but there were many more.

Jasper enjoyed making sure he also had fun.

Fingers crossed that Massimo will be better soon.

And the tree is groaning! Massimo is definitely one lucky little boy!

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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!)
Continue reading “It’s Massimo’s First Christmas!”

Nonna’s funeral on Wednesday went well and Massimo (with Sally in charge!) was waiting for everyone to come back to the house for refreshments. However I was brewing a bad throat and by Thursday morning I lost my voice. Luckily Simona stepped in and saved the day by looking after the wee man whilst I went back to bed. On Thursday night Verna came early to help out and when she put Max on the monitor she found that his saturations were low, running at best at 92% so she put him on oxygen and the next morning, in a calm and controlled fashion we called an ambulance, I stayed in bed (again!) whilst Justin took Max to A&E and then settled him up on the ward until the night staff started. The doctors have confirmed that he is well in himself and he does just have a bad cold and (if mine is anything to go by) a very sore throat.
Continue reading “Another trip back to Freddie Hewitt”

The funeral will still be held at St Mary’s RC Church, Clapham Park Road, SW4 7AR but it will be at 5.30 pm. There will be refreshments here afterwards, 37 Upper Tooting Park, London SW17 7SN.

As before, we would prefer donations and these can be made either to Trinity Hospice, who looked after her so well, or to Friends of the Neonatal Unit. However, should you wish to send flowers please send them c/o Edmund & Sons Funeral Directors, 8a Clapham Park Road, London SW4 7AR.

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”

When we went to bed on Thursday night we called PICU, as usual, to check up on Massimo’s progress only to be told that he had been so restless that they had taken him off CPAP early and he was happy and settled and all was well!

Friday was Massimo’s best day. He was off CPAP and even off his oxygen. He was happy and smiling and he even giggled – I think it was a first! The plan, at that stage, was to keep him in PICU and review him on Monday.
Continue reading “First up and then down again”

Today Massimo’s CPAP support has been turned down gradually during the day and he has been doing very well on it. The plan is to take him off CPAP tomorrow morning at 6 am and just keep him on some oxygen. At the moment he is on 30% oxygen, where 21% is air. When breathing on his own his oxygen requirement is measured in litres per minute and I think that 30% is roughly equivalent to about 6 litres of oxygen per minute.

He has been doing extremely well and today the physiotherapist Ellie came to try out a body support system on him. Should all go well we might be able to post a picture of this contraption in use for you tomorrow. Massimo looked very comfortable, if a little bemused, by this new sitting position!

Massimo isn’t out of the woods yet, but today he took two big steps forward. Firstly when we went to see him his paralysis medication had already been stopped and he was breathing well with the ventilator. No major traumas happened as he woke up, which had been their experience over the weekend, and everything went smoothly. Tattie Lucy turned up to visit at around 11.30 and when we went to see the little man he stirred and opened his eyes. He even managed a half smile! They gave him a little more sedation to send him off to sleep again and he did so gently.
Continue reading “A big step forward”

Massimo is still stable. His ventilator settings have been lowered again and he seems to be coping with these too. Tomorrow they are planning to let his paralysis medication wear off to see how his breathing copes. He will not be paralysed but he will still be heavily sedated. We will hopefully be in PICU when they do this. We will let you know tomorrow what happens.