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.
This morning, as he had been so stable over the previous 24 hours and after discussion during doctors’ rounds, Massimo’s ventilator settings were fiddled with and they have managed to reduce slightly the pressures that he is breathing with. He seems to be stable with these new settings and although he is still kept under paralysis medication this is a small step forward. The plan with the doctors is to keep him like this for the moment, keeping a close eye all vital signs, gas results, etc. We are still waiting for GOS to get back to us. Apparently there are two types of stents that can be put into his airway. One type spring open, but the feeling is that these might not be strong enough against the pressure of the tumour. We are awaiting to hear from the Registrar at GOS who inserts these to see what he thinks. The other type of stents are stronger but have never been inserted into a child as small as Massimo. Again we await to hear from the doctor who inserts these to see what they think. Essentially, what PICU at SGH are doing is what can be done at the moment. Nothing would be gained by moving him as GOS would not consider stents quite yet, but the act of moving him could be potentially very dangerous. So far, so stable.
Our attempt at a good night’s sleep was interrupted at 1.30 am by a phone call from PICU telling us that they were finding it extremely hard to ventilate Massimo and that it was a good idea if we went in to see him. We were told not to rush, it wasn’t urgent, but just to come in. Justin was dressed and I was still stumbling around looking for clothes when we received a second call saying that Massimo had settled and of course we were welcome to come in, but he seemed absolutely fine. Under advice from Mr Daya they had already changed his variable trachy tube back to his normal tube as he did seem more comfortable with the old tube.
Continue reading “Massimo (and our) worst day ever – by far”
Since the last entry on Tuesday we have had a few difficult days. On Wednesday Massimo was due to have his tracheostomy changed for one with an adjustable length. The hope was this will hold his trachea open beyond the end of the tumour which is on the outside of the trachea squashing it shut. I was under the, possibly misguided, impression that this would be happening in theatre on Mr Daya’s morning surgery list. Unfortunately Massimo was not on the list and Mr Daya’s registrar came to see Max and said that he wasn’t going to theatre as the variable tubes hadn’t arrived yet. In actual fact the tubes had been in Massimo’s cubicle on the ward since Friday. The sister on the ward (or is she a Senior Nurse?) tried in vain to contact Mr Daya’s registrar with this information but the registrar never called back, however we were told that Mr Daya would come and see Massimo at lunchtime. Lunchtime came and went and next thing I found out Mr Daya had gone down to his afternoon clinic. Massimo had been nil by mouth since 3 am as we assumed he was going to theatre but at 9.30 his nurse took pity on him and gave him a feed.
Continue reading “The many changes of the trachy tube”
Yesterday Massimo and I went to GOS for another oncology appointment and the second cycle of chemo was started. Unfortunately Massimo’s oncologist, Dr Peppy Brock, had not received her copy of the MRI scan or the pathology report so she had little to tell us about how the first cycle went.
Now Massimo is 8 and a half months old, his corrected age, i.e. the age he would be if he had not been born premature, is 6 and a half months. This means that, by age, his organs are mature enough to cope with higher doses of chemo. However he is still under 10 kgs (22 lbs) as he is now 8.15 kgs (17 lbs 15 oz) and so his new dose of chemo is 66% of the full dose. Most significantly this is more than double the last dose so we have been warned to expect him to be much more ill with it all this time. Fingers crossed that he won’t lose his lovely new blonde hair!
